Making Sense of it All

From Birth to Adulthood

A Guide to Special Educational Needs and Disabilities for Families in West Sussex

January 2022

About this book

About Reaching Families

Reaching Families is a grassroots charity led by parent carers, which aims to ‘empower, inform and support parents and families of children and young people with SEND in West Sussex.’

We achieve our mission through delivery of a number of projects and services including:

- Making Sense of it All – our in-depth parent carer guide covering issues from birth through to transition to adulthood.

- Fact sheets – a miscellaneous library of fact sheets covering a wide range of subjects and issues.

- Training – one-off training workshops and longer courses covering a wide range of subjects and issues.

- Face-2-Face – volunteer based peer befriending for parents and carers of children undergoing diagnosis and those who’ve recently been diagnosed.

- Umbrellas – four parent-carer support groups based in Billingshurst, Littlehampton, Worthing and online, via Zoom.

- Our Facebook group – information, signposting and peer support for parent carers across West Sussex.

For further information on our individual projects and services please visit www.reachingfamilies.org.uk.

A note about terminology: to be inclusive and to avoid unnecessary repetition, we have used ‘SEND’ (Special Educational Needs and Disabilities) as an umbrella term to cover any condition or additional need that children may have. Information on conditions can be found on our fact sheets, which can be downloaded from: www.reachingfamilies.org.uk/factsheets.html.

The Children’s and Families Act, 2014 defines a parent carer as being: ‘a person aged 18 or over who provides or intends to provide care for a disabled child for whom the person has parental responsibility.’ (97, 2). In this book, the term ‘parent carer’ is used in the same way to refer to families where the child’s main carers are grandparents, kin carers or foster parents, for example.

Introduction

When your child receives a diagnosis, or you suspect he or she may have additional needs, it can be hard to find your way through this strange new world of appointments and acronyms. Having been in this situation ourselves, Reaching Families created a guide to help parent carers at the start of their journey in 2011, closely followed by a transition to adulthood guide in 2015.

We are delighted to present our new guide, Making Sense of it All: From Birth to Adulthood, which brings together all of our content from Making Sense of it All and Making Sense of Adult Life in a comprehensive handbook for parents of children and young people with SEND that will support you and your family for every step of your journey.

This new guide contains information on subjects ranging from diagnosis and early years to adolescence and adulthood, further education, training and independent living. We hope in merging our two handbooks we are providing a useful resource for parents at whatever stage their child is at – whether new parents trying to find their way to those planning their young person’s transition to college or working life. We also hope that in combining both books into one resource it will stay relevant to parents for longer and will be there when they need answers to new and emerging challenges.

We are publishing our new edition at a time of great change and upheaval, almost two years after the start of the Covid-19 pandemic, which has caused such devastation and disruption to our normal lives. Whilst the worst of the pandemic appears to be over its impact will be felt for many years. In the SEND community we have witnessed a huge emotional toll on parents and children alike whilst for organisations like ours, the pandemic has meant reinventing the way we work in order to still be of service to families.

We have taken time more time to create the content for this guide as there has been so much change and upheaval to working practices and to how and when services are delivered. Software like Zoom and Microsoft Teams have enabled us to stay connected with parents and made some services more accessible, in other cases there can be no replacement for in person engagement. Writing in October 2021 when almost all social restrictions have been lifted, many projects and services, our own included, are now available both virtually and in person, albeit delivered cautiously with safety measures in place and contingency plans at hand should there be a need to revert to solely remote delivery.

The long-term impact of Covid-19 is still unknown but at Reaching Families, we will continue to closely consult parents as to how best we meet their needs, whatever the circumstances. In the meantime we hope parents find our new guide useful. It has proved a highly popular resource for families of children and young people with SEND and we hope it will earn the same accolade as its forerunners, as the parent carer’s ‘bible.’

Like earlier editions of Making Sense of It All and Making Sense of Adult Life, our new guide is available in both paperback and e-book format. You can order a paperback copy of the book from our website or download an iBook or Kindle edition directly to your laptop or tablet. We would also recommend our other information resources for parent carers, which include a series of localised fact sheets on childhood disabilities and other common issues, such as meetings, DLA, and challenging behaviour. Again, all of these are available to download from our website.

Our grateful thanks go to the following organisations and professionals:

- West Sussex professionals who have given feedback on the chapter content: Paula Bower, the Children’s and Young People’s Continence Team; Heather McIntosh; Terry McDermott; Michael Rhodes-Kubiak, Daniel Rosa; Claire Williams; and Sue Woods.

- Amaze, Brighton – Making Sense Of It All is based on their guides Through the Maze and Through the Next Maze, which remain the benchmark for measuring the quality of information provided to parents.

- The National Lottery Community Fund and the Wellesley Charitable Foundation, which supported this edition.

- The creative team: Sue McMillan (editor); Kirsty Lester (directory updates); Lindsey Johns and Charlie Rowlins (book design); as well as Donna and David Elston for the beautiful back cover image.

The Trustees, Reaching Families

Using this guide with the Local Offer

In September 2014, the Children and Families Act made it a statutory obligation for local authorities to provide parents with information on SEND provision in their area via a website known as the ‘Local Offer’. This should be available to all families who have children with SEND aged from birth to 25 years and it must also be available in another format to families who don’t have access to the Internet.

The Local Offer brings together information and services available in a given local authority area. To create their Local Offer, each local authority must talk to parent carers, as well as children and young people with SEND, to see what sort of services and support they need.

No information resource, whether online or printed, can be truly encyclopaedic. By definition the information landscape is constantly changing – services change shape and structure, new organisations are founded while others close.

This is why we believe that used together, our book and the Local Offer website complement each other brilliantly. Where you cannot find information in one we hope that you can find it in the other. The constantly changing landscape also means we will produce further editions of our book on a two-year rolling basis.

We hope that by using our book, Making Sense Of It All, with the Local Offer you will have the best support and information at your fingertips, so you can navigate your way through the system as smoothly as possible.

We also publish an electronic version of our book in iBook and Kindle format, which you can use in conjunction with the Local Offer on your tablet, phone or computer when you are on the move. To download a free copy of our e-books, go to: www.reachingfamilies.org.uk/guide.html.

For the Local Offer go to: https://westsussex.local-offer.org.

Section one: Starting your journey

Diagnosis

It’s like being hit with a mallet, isn’t it?

Most of us at Reaching Families agree that one of the hardest times we have faced as parent carers is the early days, when we were first aware that our children may have a disability or additional needs. Some of us were given a diagnosis before or just after our children were born. For others, the needs of our children have only become apparent over time, or have been acquired due to an illness or an injury.

A few of us discovered that, although it was clear that our children have additional needs, professionals were unable to give us a firm diagnosis.  This can be quite common for children with complex needs, or unusual symptoms, or there may simply be no identifiable reason for the issues our children have. Not having answers or being able to put a name to our child’s condition can be exceptionally hard.

‘I expected them to be able to tell me what was wrong, and they didn’t, they couldn’t, as it were, so that was a bit of a shock. It shakes your faith a bit, doesn’t it?’

But the thing that unites all parent carers is that the immediate aftermath of realising our children have additional needs is very painful. We have to adjust the path we had planned for our family and accept that some of the things that we have dreamed of for our children may not happen. Some of us felt like we were grieving for the child we had imagined we would have and felt unsure that we could cope with what lay ahead.

We found that the most important thing was to find out how we could help our children and one of the best ways of doing so was by speaking to parents who have been through it themselves. This is why we created Making Sense of it All. Our new edition combines the content of our previous books, Making Sense of it All and Making Sense of Adult Life, into a new handbook, which we’ve divided into three sections: Starting your journey covers the early days post-diagnosis; Finding your way will help you to deal with essential SEND topics such as education, money and health care, including what changes when your young person reaches adulthood; while Teens and Adulthood covers additional topics for families of young people with SEND, such as relationships, employment and life skills. We hope that by sharing our experience and knowledge our book will support you throughout your SEND journey so that you can make the best choices for your child and family.

Feelings around diagnosis

Parents have very different reactions when they realise their child may have additional needs. Some may shy away from it, in the hope that things will be OK, others find that they have to convince their doctor or health visitor that their child needs further investigations.

Some of us felt completely devastated, then angry – why us? Was it something we did wrong during the pregnancy? Could we have done anything to prevent it? Why wasn’t it picked up during pregnancy? And yes, we all felt bereft: ‘this isn’t the child I expected.’

‘I was doing the reverse – I was frantically making out that it was going to be all right, although I really knew that there was something wrong… I was fighting it all along.’

It is common to feel crushingly guilty at some of the thoughts that go through our heads:

‘I won’t be able to cope, I don’t want to have to cope, this isn’t the path I had planned...’

Whatever you’re feeling at this moment – anger, despair, fear or overwhelming protectiveness – all of us have experienced similar feelings and understand just how difficult it is to process these emotions. For a time it feels like nothing will ever be the same again.

‘To me, it was like someone had died, and it takes a long time to come to terms and to be rational about it afterwards.’

In spite of the strong feelings it evokes, having a diagnosis can be helpful. You can start to read up on the condition, join relevant local or national organisations, find out about the latest research and, perhaps most importantly, meet other parents in the same boat. It can also be a great asset when you’re applying for various benefits to be able to say, “my child suffers from X syndrome” or “has Y disability”.

Strategies for coping with diagnosis

It can take anything from a few months to several years to feel like we are beginning to deal with this different life and for it to become the ‘new normal’. We all need a lot of help along the way but it can be useful to think about what steps you can take to make sense of what you are finding out about your child. You may find these suggestions helpful:

- Ask someone to come with you to support you in the appointments. If you are given unexpected news, it can be difficult to deal with alone.

- Make a list of questions you want to ask and take it with you – don’t be afraid to raise any concerns you have.

- Take time to think about what is said and, if you don’t understand something, ask.

- Ask what will happen next, who you can speak to regularly for advice and where you can get more information.

Getting a second opinion

Sometimes parents want a diagnosis reconfirmed in order to feel sure they have explored every possible avenue on their child’s behalf. Some doctors are very sympathetic towards these feelings. Your child’s GP or consultant may be willing to refer you to a different consultant for a second opinion, but they don’t have to if they don’t agree it’s necessary.

Parents who can afford to might choose to approach consultants privately. Private health care is very expensive and it’s not easy to discover for yourself who is an expert in any particular condition. You may be able to get advice about this from The Patients’ Association, the Care Quality Commission (CQC) or the Patient Advice and Liaison Service (PALS). You can find their contact details in the Local/National directories at the back of this book.

If your child has a specific condition, the relevant local or national support group may provide you with advice or support and some have medical experts of their own. For example, The Down’s Heart Group gives support and information to families regarding heart conditions associated with Down syndrome. The NHS website also has information on many conditions.

It can also help to talk to parents who have faced similar situations. There may be different approaches that other families have found, or simply a different point of view on the problem.

Where your child might be diagnosed

Before birth or shortly after birth

Some of us knew before our babies were born that they were likely to have some sort of disability. It’s a time for lots of questions: ‘What treatment is there?’; ‘Will my baby need surgery?’; ‘Is it life-threatening?’; ‘Where can I find out more?’ Many of these questions can be answered by your consultant, who can talk you through what is likely to happen.

Some of our babies started life on the Special Care Baby Unit (SCBU) at St Richard’s Hospital in Chichester, East Surrey Hospital in Redhill, Princess Royal Hospital in Haywards Heath, Worthing Hospital, or if they are in need of more intensive treatment, at the Trevor Mann Unit at the Royal Sussex County Hospital in Brighton.

In some cases, children are referred for further tests to London hospitals such as the Evelina Children’s Hospital, Guy’s and St Thomas’, Kings College Hospital, Great Ormond Street Hospital or St George’s.

Child Development Centres

Many children will be diagnosed or assessed at their local Child Development Centre (CDC).

There are four CDCs in West Sussex: Chichester; Crawley (which also has an outreach clinic at the Hilltop Centre, Horsham Hospital); Haywards Heath; and Worthing.

If you are worried your child is not developing normally and would benefit from an assessment at your local centre, ask a professional, such as your GP, preschool teacher, health visitor or consultant, for example, for a referral.

Many different specialists are based within the CDCs, including paediatricians, social workers, health visitors, clinical psychologists, dieticians, speech and language therapists, occupational therapists and physiotherapists. They work together to assess children, both individually and collectively, then plan a programme of therapy and treatment.

Chailey Heritage

Children with complex physical or neurological disabilities are often referred to Chailey Heritage, near Lewes. Chailey is a highly specialised centre for children with complex physical disabilities and health needs.

Two organisations work closely together on the Chailey Heritage site:

(i) Chailey Clinical Services is part of Sussex Community NHS Foundation Trust and can be accessed through a referral from an NHS clinician.

Their multidisciplinary team offers a range of services for children and young people including medical, clinical and therapy services, rehabilitation engineering, residential short breaks and shorter community breaks.

In the Rehabilitation Engineering Unit, engineers and technicians adapt or make equipment to help with mobility and communication. Another team work on postural management. They design and adapt equipment so that children can sit, lie or stand to the best of their ability.

(ii) Chailey Heritage Foundation is a charity that includes a school for disabled children between two and 19 years, residential services from short breaks through to 52-week care, holiday activities, post-operative care and a transitional residential service for young adults aged over 19.

Chailey Heritage School is for children and young people with complex physical disabilities, high health needs, sensory impairments and associated communication and learning difficulties. Children who attend the school have and EHC Plan with Chailey Heritage School named as their placement. Chailey offers education on a residential or day basis and input from NHS nurses and therapists is fully integrated into teaching and learning within the school and into the residential services.

At the school, a variety of Augmentative and Alternative Communication (AAC) systems are used, including the Chailey Communication System (CCS), which was developed jointly by the school and Clinical Services. These systems are used to help each child reach their full communication potential.

Child and Adolescent Mental Health Service (CAMHS)

Some children with emotional well-being, mental health problems or behavioural difficulties may be referred to the Child and Adolescent Mental Health Service (CAMHS) for assessment and diagnosis. This includes many children with conditions such as Autism or Attention Deficit Hyperactivity Disorder (ADHD) as well as conditions such as anxiety and depression.

CAMHS have a team that specialises in children’s mental health including child psychiatrists, family therapists, counsellors, play and art therapists. If you think your child needs to go to CAMHS, it’s often easiest to speak to your GP first and ask for a referral to a community mental health worker or CAMHS. You can also be referred by other professionals, such as a school nurse or teacher. It is possible to contact CAMHS directly, but they’ll want to know if you’ve tried other less specialist services first, such as the school nurse or your GP.

Finding out more

If your child receives a specific diagnosis, you may wonder where you can get information about their condition or disability. The NHS website has a fairly comprehensive A to Z list of illnesses, conditions and disabilities. BUPA also has a similar online directory.

Reaching Families has published a series of localised fact sheets on a range of disabilities, which may prove useful when you are beginning to find out more about your child’s condition, their needs and what support is available to them locally. All of our fact sheets are available to download free from our website. They combine clinical information on individual conditions with information on relevant support that’s available locally.

We have also published a second series of fact sheets on a range of other issues that may be useful when you are beginning to learn about your child’s needs and how you can support them. The fact sheets cover a wide range of topics such as sleep issues, how to claim DLA or PIP, attending meetings and SEN support at school as well as how to apply for an Education Health and Care Needs Assessment. These too are localised and contain information on the support that is available to parents in West Sussex.

Many of the most common conditions have local support groups, which are listed at the back of this book. We also list many of the national organisations that can offer support.

Contact is a national organisation that offers support and information to parents of children with disabilities. It has a large resource library on its website: https://contact.org.uk. It covers a range of subjects including: information on conditions, family well-being, benefits advice, and getting support from education, health and social care.

The Council for Disabled Children also has many resources to support parent carers. You can find out more at: https://councilfordisabledchildren.org.uk.

If your child has a rare condition it may be more difficult to get the information you need. However, Contact produces a comprehensive directory of specific conditions and syndromes with details of family support networks. They also co-ordinate a network for parents whose children have a rare condition or no specific diagnosis.

You can also get information and advice from The Genetic Alliance UK, as well as Unique, the rare chromosome disorder support group, or Syndromes without a Name (SWAN), see National Directory for contact details.

Editor’s note: throughout the book we provide links to other SEND organisations and services. During the Covid-19 pandemic many have experienced disruption, with some services and groups pausing or moving online. We recommend that you check an organisation’s website for their latest updates on what is running and whether services are in-person or online.

Section one: Starting your journey

Someone to talk to

‘Being listened to – that’s really important – to have people around who are prepared to listen to you, because it is important to say how you’re feeling.’

Finding out your child has SEND can be very painful. Sometimes, years after we first heard the news, many of us still relive everything that happened at that time.

Our children are all very different, but the one thing we all have in common is the need to talk about what happened. For some of us, having a supportive family can be enough.

Some of us met someone who was a marvellous shoulder to cry on. Others were pointed in the direction of a parent support group or counsellor.

Groups for specific conditions

‘That’s what I found the most helpful – that other parents had gone through the same things as me, and you know they’re still around – sometimes you tend to think you are the only person that this has ever happened to.’

Especially in the early days, many parents find that joining a parent support group specifically for our children’s condition is a lifesaver. If your child has just been diagnosed and you’re frightened of what might lie ahead, meeting a parent with an older child with similar needs to yours can make you feel more able to manage. People whose children have similar needs can be a great source of support and information, and they may also become good friends.

The following is a list of the major support groups for parents operating across West Sussex. Contact details can be found in the local directory at the back of the book; most also run Facebook groups:

- Aspens holds workshops, and gives advice and support to families across Sussex, as well as holding social groups and clubs for children and young people and family fun days.

- Autism by the Sea is a support group for parents of children with autism in Worthing and the surrounding areas.

- Autism Support Crawley is a support group for parents and carers of children and adults on the autism spectrum or with social communication difficulties. They hold regular meetings in Crawley, dates and venues can be found on their website.

- Chichester Down Syndrome Support Group runs regular coffee mornings, social events and family outings for families of people with Down Syndrome.

- Dame Vera Lynn Children’s Charity (DVLCC) supports children under 5 with cerebral palsy and motor learning difficulties, providing early intervention based on conductive education. It also offers parents support.

- Guild Care runs various services for families of children and adults with learning disabilities and complex needs, including a support group. At the time of going to press this is being redesigned after Covid-19, so please contact Guild Care for more information.

- Hyperactive Children’s Support Group provides information and support to families of children who have ADHD or are hyperactive. Has a Facebook page as well as a website.

- Parenting Autism Together in Horsham (PATH) is a Facebook group for parents of children with autism, based in Horsham.

- Puzzle Pieces is a parent-led support group for parents with children on the autistic spectrum, based in Bognor.

- Reaching Families runs support groups called Umbrellas for parents of children in mainstream schools at several venues across the county, as well as having a very active closed Facebook page.

- Special Families is a support group for families with disabilities and special needs in East Grinstead and the surrounding villages.

- West Sussex ADHD Support holds regular meetings in Worthing and also has a Facebook group.

‘It’s useful for a parent to meet another parent who has a child who’s a bit further down the line...’

Parent-led general support

‘What I found most important was finding the right person on your wavelength, who you actually can get on with as a person and has got the added thing of having an appropriate special needs child. I was lucky – I had this girl down the road, but she’s moved now, and I really miss her.’

There are a number of general support groups and projects in West Sussex for parents of children with special needs, such as Parent and Carers Support Organisation (PACSO) and Carers’ Support West Sussex.

Elsewhere in the county, Kangaroos in Haywards Heath holds various events and family days, which provide the opportunity to meet other parents. St Matthew’s Church in Worthing runs a parent and toddler group called SNAPS.

Nationally, Contact hosts an online forum, which you can access via their website: https://contact.org.uk. It enables families affected by disability to get support by speaking to others about the issues that affect them.

The parenting websites Mumsnet: www.mumsnet.com and Netmums: www.netmums.com, both have forums with devoted SEND areas where you can also chat to other parents.

Facebook

Facebook has proved to be a very popular way of parents making contact with one another and staying in touch with what is going on locally. Almost all of the local charities and support groups mentioned in this guide have a presence on Facebook.

We would therefore suggest that parents who are not already on Facebook may find it useful to sign up, so that they can join relevant local charities and support groups.

Community support groups

There may also be parent groups in your area that are not specifically for parents of children with special needs. If you are a single parent, Gingerbread and Single Parents Information Network (SPIN) may be able to put you in touch with others in similar circumstances. Working Families is another useful group, which has a dedicated network and advice service called ‘Waving Not Drowning’ for parents trying to combine paid work with caring for children with disabilities.

Support from professionals

There are many local and national organisations that can offer information and support to parent carers. Some cater for specific disabilities; others are for anyone who may be caring for a child with special needs.

At the time of writing, a number of local authority services in West Sussex are being reorganised, including Early Help services. Currently, Children and Family Centres are operating throughout the county and offer many of the services listed below. To find your local Children and Family Centre/Family Hub go to: www.westsussex.gov.uk/fis and click on ‘family activities and support’ then choose ‘children and family centres.’

In January 2022 there will be a relaunch with twelve Family Hubs serving the county instead – you can use the above link to find out what’s on offer or call the Integrated Front Door for more information.

Family Hubs

From January 2022, Children and Family Centres will be replaced by twelve Family Hubs, offering support to all families of children under the age of 18 with a focus on under fives, or up to 25 years if your child has a disability. They will offer access to:

- information, advice and support

- help to find childcare

- health clinics

- voluntary and community groups

- sensory toy libraries

- FindItOut Centres for young people

- crisis support

- additional support for families of children and young people with SEND.

Family Hubs will be located at Bognor Regis: Treehouse; Chichester; Crawley: Bewbush and Broadfield; Worthing: Durrington, Footprints (Worthing Library) and Lyndhurst Road; Haywards Heath; Horsham: Needles; Kingston Buci; Lancing; and Littlehampton.

You can approach your local Family Hub (or Children and Family Centre in 2021) to see what additional support might be available to your family. To find out what’s on offer go to: www.westsussex.gov.uk/fis and click on ‘family activities and support.’ In the next window, select ‘family activities’ then enter your postcode and click on ‘SEND activities’ from the drop-down categories to see what is available locally. Parent carers can also ask for support through a number of other channels, including the Integrated Front Door (see Essential Contacts), their health visitor, GP, or West Sussex Young Carers, for example.

Enabling Families

This service provides support for families with issues such as behaviour, play, healthy lifestyles and parenting difficulties. An Enabling Families appointment can identify whether a family may need further targeted support such as Early Help. You can arrange an Enabling Families appointment by calling the Integrated Front Door, or ask your health visitor, GP, midwife or preschool.

What is Early Help?

Early help offers support to families and parents to be who may need additional assistance that can’t be provided by universal services. It aims to ensure that the child’s needs are met as well as those of the family.

Some families might be referred to Enabling Families or if it is felt that they need more support an Early Help Plan might be written to meet the needs of the child and family. Giving families help and support at an early stage is important as it can avoid situations escalating to crisis point.

Toy libraries, sensory toys and equipment

Toy libraries are based in some Children and Family Centres/Family Hubs and some local libraries. These resources can be borrowed by all families. In addition, specialist sensory stock is held at a number of Children and Family Centres/Family Hubs. To find out more, go to www.westsussex.gov.uk and search for ‘toy libraries’.

Your local Portage office may also be able to advise you about toys to help your child’s progress. Again, their details can be found at the back of this book.

Home-Start

This charity is designed to support families with at least one child under five. The programme provides trained volunteers, who are usually parents themselves, to provide emotional support, practical help and friendship to other parents of young children.

There are three Home-Starts in West Sussex: Arun, Worthing and Adur; Chichester and District; and Crawley, Horsham and Mid Sussex (Home-Start CHAMS), see Essential Contacts for details.

General support

Reaching Families, Wellspring, and the West Sussex Parent Carer Forum (WSPCF) are the main sources of information and advice for parents in West Sussex. The West Sussex Local Offer also lists a wide variety of services available to children and families as well as providing information on SEND.

Nationally, Contact offers information, advice and help for parents of disabled children and also has a helpline, the number for which is at the back of this book. Go to: https://contact.org.uk.

Training for parent carers

Reaching Families provides training on a number of subjects for parents at various locations and venues across West Sussex. Since the Covid-19 pandemic, we have also delivered many of our courses online via Zoom.

Subjects covered include: anxiety in children, behaviour; benefits; EHC Needs Assessments and Plans; understanding autism in girls; and handling stress and building resilience. To see our schedule of online and in-person courses, please take a look at our website. We would also recommend joining our Facebook group and mailing list by sending an email to: info@reachingfamilies.org.uk.

A number of other organisations provide training to parent carers in West Sussex. If your child is on the Autistic spectrum we would recommend contacting Aspens: www.aspens.org.uk.

West Sussex Parent Carer Forum (WSPCF) represents the voices of parent carers at a strategic level to help shape services in the county. They produce a regular newsletter and hold events and training: www.wspcf.org.uk.

Counselling

‘The ability to speak to someone you know will listen and know what you’re talking about – that’s the most important thing for us – to be listened to and to be taken seriously. I know if we didn’t have that we wouldn’t survive… it literally keeps our family together.’

If you think you’d benefit from a place where you can talk openly with one person about how having a child with SEND is affecting you, you may want to consider counselling. There are various kinds of services available in this area. Help may be short- or long-term, it may be free or involve payment.

Carer’s Support West Sussex provides counselling sessions and other support focusing on emotional well-being, respite and relaxation, as well as a telephone support service. They also run the Carer’s Health and Well-being Fund. Parent carers can apply for a small grant, which can be used flexibly to enhance their health and well-being. Call: 0300 028 8888 for an application form.

There are also a number of generic counselling services in West Sussex, some of which provide counselling based on a client’s ability to pay. Worthing Counselling Centre works in this way, as do the Arun Counselling Centre and Chichester Counselling Service, see Local Directory for details.

Relationship counselling

‘We’ve found weekends away absolutely essential. We save up, we go to a hotel. Our carer has Jane, and somebody else has to have the others.

Some of us have found that as a couple our challenges have brought us closer together. However, having a child with SEND can put an additional strain on relationships. It’s harder to find quality time and after a challenging day, it’s all too tempting to retreat as emotionally you feel you have nothing left to give.

If you’re beginning to see warning signs this is happening to you there are groups that can help, for example, Relate, which has three branches in West Sussex.

Section one: Starting your journey

Survival strategies

As you’ve no doubt gathered by now, the road ahead may be bumpy at times. Getting the best for your child can take a lot of effort, but it can be done. Here’s a selection of our top survival tips for maintaining your sanity and getting the best outcomes for your child.

Talking to professionals

‘All parents worry about whether they are doing the best by their children, especially when you know that if you don’t get the best for your child they’re not going to get anywhere on their own.’

- Keep a notebook or diary, you wouldn’t believe how much information you start to collect.

- Note the date of any telephone calls you make and any letters you receive, and keep copies of anything you send.

- Take notes of conversations as you may need to refer back to them at a later date.

- Start a file for copies of all the letters and reports you get about your child. Over time you will gather a lot of paperwork, so organising things as you go means you will be able to find things quickly, should you need them for things such as a Disability Living Allowance (DLA) application.

On the phone

‘Always be extra-friendly with receptionists and secretaries, they are your gateway to the chief!’

Make sure you’re talking to the right person, or persist until you get hold of them. Don’t be put off by someone being hard to reach. Note down when they’ll be back and call them then.

Try to be patient – no one else is as emotionally involved as you are, but be prepared to be firm if necessary.

Always be friendly to receptionists and secretaries and let them know how much you appreciate their help.

Get to know who’s who in the place you’re calling and go to the top if you need to.

Be specific – plan out what you want to say before you ring.

At appointments

‘When you’re presenting your case, like at social services, sometimes you can just get so upset, because you’re going through all the worst things, aren’t you? Trying to explain to somebody what it’s like can be really upsetting…’

- Take someone with you for support and ask them to take notes.

- Ask the professional if you can have copies of any notes they take.

- Don’t be afraid to ask questions, especially if you don’t understand what’s been said. If you’re still confused, ask again.

- If English is not your first language, ask for an interpreter.

- Be prepared for clinics running late and take activities to occupy your child, or ask if your child can be seen before others who are more able to wait.

- Choose who is present and say no if onlookers might make you or your child feel uncomfortable.

- Have faith in your own experience – you know your child better than anyone else.

And afterwards

‘I complained to the consultant about the way I was treated in hospital. I wrote this great long letter, and I was so impressed with myself afterwards, because all the grievances came out, and I thought, ‘Oh God, she’s never going to speak to me again.’ But I sent it off, and she was excellent, and it never happened again...’

- Follow up appointments with questions in writing if you think of them later on.

- Ask when you can expect replies to requests – make a note in your diary and follow it up if you haven’t heard by then.

- Make sure you meet deadlines – it’s in your interests to think ahead.

- Make sure professionals know if you’re unclear or unhappy about anything, a brief word or telephone call may be all that is needed to sort things out.

- Let people know in writing if things start to go badly wrong – don’t wait until you’re in crisis.

- Don’t feel bad about changing specialists if you don’t get on or feel their approach is wrong for you or your child.

‘I changed my physio – I knew she’d be better off with this other girl. She used to sing a lot and Alex loved the singing. It was a real trauma to change, but I was so pleased that I’d done it, because she was so much better.

Looking after your child

‘I tried to carry on doing everything and then I couldn’t manage, really. But then it needed someone else to come in and say, “It’s all right, actually, you don’t have to do all these things, and Alex will be perfectly fine if she doesn’t do these things.’’

- Remember, not every minute of your child’s time has to be filled with therapy – do things you both enjoy without feeling guilty.

- Find out about your child’s condition – national organisations can give support, advice, and perhaps information on the latest research into your child’s condition.

- Ask your support group to help. Remember, they’ve heard it, seen it, and been there before. They may be able to go to meetings or reviews with you, or write letters of support for you.

- Explore financial help, don’t feel embarrassed about asking for it – not all benefits are means-tested.

- Ask other parents about their experiences, they will often be your best source of information.

- Teach your child to be as independent as possible, it will make your life easier in the long run.

Looking after the whole family

- Try to do things as a family – it’s easy to concentrate too much on your child with SEND and hard to strike a balance.

- In the early days, or during a crisis, appoint someone outside the immediate family to be the contact person for news. Ask them to pass on messages and let people know when they can visit.

- Don’t be afraid to take the phone off the hook and enjoy what peace and quiet you can.

‘It’s looking ahead at a strategy that is not going to crack any one of you up – you can’t have a weekly routine that’s going to leave you exhausted.’

Looking after yourself

- Don’t be ashamed to say, “I can’t do this any more.” Ask for help when you need it.

- Find someone who will listen and take you seriously, someone you get on with and trust.

- Be selfish – if you go under everyone will suffer. Put yourself first for once.

- Find ways of pampering yourself – have a massage or some reflexology. It needn’t be expensive – some organisations provide special cheap, or sometimes free, treatments for carers.

- Be prepared to deal with well-meaning but insensitive comments sometimes, even from family and close friends. In time, you’ll find you get better at hearing what people mean to say.

- Make sure any groups you join are supportive. If you come home feeling worse, it’s not worth it.

- Have an outside interest, like work, a sport, or hobby. Having somewhere to go where you’re treated the same as anyone else puts things back into perspective.

‘I play sport – that’s my stress relief. I think it’s essential, and nobody asks you how your child is – I’m a person! It keeps your mind and body together.’

Section one: Starting your journey

Siblings and wider family

‘My family is different to other families, but that’s okay. It’s different, but special.’

When your child is diagnosed with a disability, many families feel as if life has been turned upside down. The immediate focus tends to be on finding out more about the disability and making sure you put in place the right support to meet your child’s needs. However, it is also very important to make sure that other children in the family understand what the diagnosis means and are given lots of support as they adjust to the changes.

There are many positive things about being a sibling of a child with SEND. Siblings often learn new skills, such as sign language or first aid, and feel really proud of their knowledge and achievement. Yet it can also be a mixed experience. Throughout their lives, brothers and sisters share many of the concerns and worries that their parents experience, such as feeling isolated, needing information, concern for the future and the demands of caring.

As well as having lots of positive feelings about their sibling, brothers and sisters of children with SEND can experience a wide range of complex emotions:

- Siblings can feel lonely at times. It could be that they find it difficult to talk to anyone about their brother’s or sister’s needs or feel they can’t invite friends home. Siblings may spend more time on their own while parents care for their brother or sister.

- It is a completely normal part of a sibling relationship to feel angry sometimes. Children can get angry if they have been hurt, or had their possessions broken by their sibling, or if they can’t do something or go somewhere because of their sibling’s needs.

- Embarrassment can be uncomfortable to experience and can go hand in hand with feelings of guilt. People can stare at people who are different, and some may even make comments. Siblings can experience feelings of hurt and embarrassment in this situation and then feel guilty for having those feelings.

- Feelings of worry can include: concern for their brother or sister, especially if they have health needs; worrying about their parents; worrying about all the things that parents are stressed about; and worries about what the future holds.

- It is normal for siblings to feel sad at times. Sadness can occur because of particular events, such as their sibling being unwell and having to stay in hospital, or it could be because their brother or sister isn’t like other brothers and sisters. Siblings may feel sad that they can’t always do the same things that other children and families do.

- Jealousy and resentment can be common emotions experienced by many siblings, regardless of disability. Sometimes, sibling children can have feelings of jealousy about the amount of time and attention that is spent on the child who has SEND. Resenting their brother or sister because of this is understandable but at the same time it is something siblings should be encouraged to talk about.

‘I feel bad whenever I achieve something that my sister can’t.’

Parents’ time and attention

Often, siblings don’t get enough individual time with their parents. Parents of children with SEND have a lot to juggle and as a result, siblings can receive less time and attention. Children can understand that their brother or sister needs more help, but it can still feel unfair.

‘Sometimes I feel jealous of him because my parents make a lot of fuss over the things he does, but not as much when I do good things.’

Caring responsibilities

Many siblings help their parents to look after their brothers and sisters in a variety of ways. It may be that they supervise while parents pop into another room, help with feeding or drinking, or carry out household chores. It is a part of family life that members help and support each other. However, it is important that siblings are not carrying out too many care tasks and that they have time to do their schoolwork and spend time with their friends.

Bullying

Sadly, bullying can be very common. Sibling children can get teased or bullied because they have a brother or sister who is different, or because they can’t always do things that other children can. Siblings are often very protective of their brother or sister and perhaps feel angry and sad when they are teased. However, sometimes siblings may experience conflicted loyalties between family and friends and may take part in teasing the disabled child. Extreme feelings of guilt usually follow. Because of these experiences, siblings of disabled children can be more sensitive to others’ feelings.

Being hurt

‘I have shouting matches with my sister. We don’t always get on, but I love her – just like other siblings I suppose.’

Some children have brothers and sisters who may hurt them due to their SEND. They may get bitten, hit, have their hair pulled, or they may be verbally attacked. This is, of course, upsetting but can also be confusing and difficult for the sibling to understand. Regardless of the reason for the challenging behaviour, when a sibling is hurt by their brother or sister it can be frightening, hurtful and distressing. Sibling children need their parents to explain what has happened and why, and also need to see that they are putting strategies in place to avoid further incidents.

Missing out

It can be difficult for sibling children to have friends round to the home for practical reasons. Also, siblings may not want to invite people as they may feel uncomfortable or embarrassed about their brother’s or sister’s SEND. Providing care for a disabled brother or sister may impact on a child’s ability to complete schoolwork, attend clubs or have one-to-one time with parents. There may be limited opportunities to go on family holidays and days out because of challenging behaviours, accessibility issues or financial restrictions.

Out of the loop

‘Looking back, the single most important thing to me was to be told the truth and be kept informed.’

Often, siblings do not receive accurate and age-appropriate information about their brother or sister’s condition. Without this knowledge, some siblings may try to fill in the gaps themselves and make all sorts of wrongful assumptions. This can create feelings of self-blame and guilt. Providing siblings with the correct information and answering any questions they may have should prevent some of these feelings and ensure that they feel informed and involved.

The future

What is going to happen in the future is a huge concern for parents, but it is also something that can be a worry for siblings, too. The thought that they may be responsible for the care of their brother or sister in the future can be overwhelming, so it is extremely important that this is discussed as a family.

Ways to help

- Recognise and acknowledge their worries. Always take time to listen to any questions or concerns.

- Find activities that siblings can do with their brother or sister.

- Communicate. Keep them informed and up-to-date. Ensure they have the facts and haven’t made assumptions.

- Make sure that siblings get one-to-one time with you.

- Provide opportunities for siblings to meet their friends.

- Limit the type and amount of care that the sibling does.

- Have a safe place for your sibling child’s treasured possessions if damage is likely.

- Be consistent and as fair as possible.

- Role-play can help as a way of rehearsing how to respond to teasing or bullying.

- It is important to help sibling children to recognise and acknowledge their role in the family. Improving communication and sharing feelings will help with this.

Young carers

Under The Care Act, 2014, the needs of your other children as siblings of a disabled child should be considered. Support for young carers may include:

- Regular breaks from caring so they can spend time with friends and enjoy the same opportunities as other children and young people of the same age.

- The chance to meet other young carers at local groups.

- Ensuring the young carer has support from other adults in their life and has someone to talk to when things are difficult.

- Help for young carers during transition and significant life events

To arrange for someone to assess what support is needed, contact West Sussex County Council’s Young Carers service by calling 01903 270300. You can find out more about the service at: www.westsussex.gov.uk/youngcarers.

Grandparents and the wider family

Sometimes, relationships within a family can be difficult. When a child is born with or gets a diagnosis of SEND, this can add to stresses and strains in relationships.

Grandparents, along with other close family members may go through the same cycle of emotions as parents: anger; grief; denial. Some individuals can find it extremely difficult to come to terms with. It is important, however, to recognise the contribution that grandparents and wider family members can make in supporting families with disabled children.

Parents who have disabled children often face additional caring responsibilities and emotional demands and this can result in feelings of stress. Support from close family is vital for parents in terms of adjusting to change and coping with stress.

Grandparents can play an important role by providing the family with practical and emotional support. Often, grandparents feel that having a child with SEND in the family has given them greater understanding and compassion, and it can help to bring the family closer together. However, for some family members it can bring feelings of being under pressure to offer help and support.

Grandparents and the wider family may not always agree with the way that parents are raising their children. This can be a source of conflict, especially as it is vital that children with SEND have a consistent approach as difficulties can be avoided by everyone responding to the child in the same way.

Grandparents can play a key role in caring for children with disabilities so that parents can have a break or some one-to-one time with their other children. They can also support siblings by taking them out and offering them a break away from home.

Top tips for grandparents and close family:

- Offer whatever support you can manage – don’t wait to be asked.

- Follow the parents’ lead.

- Listen and give advice if requested.

- Focus on the child, not the diagnosis.

- Helping with phone calls or accompanying parents to meetings can relieve pressure.

- Be there, even if it’s just at the end of the phone.

- Help with practical tasks such as cooking a meal or doing the shopping can make a big difference.

Parent carers can support grandparents and other family members by keeping them up-to-date with what is happening in the family and helping them to learn about the child’s SEND via support groups, websites and Facebook pages.

Asking for help from family can be difficult but doing this and being clear about the support you need can be a way forward. Sometimes, family members may wait to be asked as they may feel that they would be interfering if they offer help first.

Giving grandparents time and opportunities to get to know the child is so important. Having a close relationship can strengthen the whole family.

If grandparents or wider family are playing an active role in caring for a child with additional needs, parents might consider inviting them to take part in reviews, meetings, appointments or events at school.

Other sources of support

Local organisations

Contact details for all the organisations listed below can be found in our Local Directory.

- Ashdown Club (Worthing) offers support to families of children and young people with special needs. Ashdown Siblings sessions are available in school holidays to siblings of children who use their services.

- Aspens runs a monthly group for children aged eight to 16 who have a sibling with autism, learning disabilities or complex needs. It also offers support services for

- Chestnut Tree House runs support groups for the siblings of children who are cared for by the organisation and those who have been bereaved.

- Gully’s Days Out provides opportunities for disabled children and young people to access some of Sussex’s top attractions and leisure facilities. Tickets are limited and must be requested through the team.

- Horsham District Sport Development’s Reaching Higher Activities (5 to 18 years) offer term-time weekly sports and arts groups. Siblings and friends are welcome.

- Lodge Hill Trust holds Family Fun Days with a relaxed, friendly atmosphere, where everyone can enjoy outdoor and indoor activities as a family and with friends.

- PACSO provides holiday clubs and family days for disabled children and their siblings in Chichester and Arun.

- Social care – can assess the needs of all the family, including you as a carer and siblings of disabled children. Call the Integrated Front Door for children aged under 18. If your disabled young person is over 18, call the Adults’ CarePoint. See Essential contacts for contact details.

- Short Breaks for Disabled Children runs holiday clubs, after-school clubs, buddy schemes and short breaks at home or in the community, some of which are open to siblings.

- Sussex Snowdrop Trust – supports families of children with life-limiting or life-threatening conditions, in a limited catchment within West Sussex.

National organisations

Contact details for all the organisations listed below can be found in our National Directory.

- Barnardo’s runs projects to support young carers and siblings of children with learning disabilities.

- The Carer’s Trust provides online support for all young carers, including those who have siblings with disabilities.

- Contact has information and resources, including a section about supporting siblings as well as a helpline and a ‘listening ear’ service.

- Kinship (formerly Grandparents Plus) supports any kinship carers, including grandparents, aunts, uncles and family friends who step in to raise children when the parents cannot do so. It includes information about supporting children with SEND.

- Sibling Support is a US website with information and links, as well as useful books to share with your children. Go to: www.siblingsupport.org.

- Sibs is a website for brothers and sisters of disabled children and adults.

- Winston’s Wish provides support to bereaved children and their families.

Section two: Finding your way

Education

Education is a big part of family life for many years. If your child has SEND, there can be additional anxieties around finding the right placement for him or her and ensuring that they have the correct support in place to help them to learn and achieve the best possible educational outcomes.

Some of us know from birth that our children will need additional support with their education, but for many families, their child’s additional needs will only become apparent once their journey through the education system has begun.

This chapter will outline the law around SEND, the types of support available to children with SEND, tips and advice on choosing the right type of setting for your child’s individual needs as well as options for further and higher education.

SEND law

If your child has recently had a diagnosis, it can feel overwhelming when you are faced with lots of jargon, especially when people start throwing around terms such as ‘Children’s and Families Act’, ‘the Code’ and ‘Tribunal’ but many parent carers find it empowering to familiarise themselves with the basics so they can make the right decisions for their child.

Showing that you know what the law says and what your child is entitled to can be incredibly effective in meetings, so we will open this chapter by giving you a brief overview of how SEND law fits together with links to the legislation so you can read up on it if you choose to.

If this feels too daunting, there are a number of organisations with resources to explain the law in simple and digestible ways. Many also have advice on tackling common problems, as well as template letters to use if you need to write to the local authority or your child’s education setting.

Below you’ll find a brief overview of SEND law, with further links to the documents and other organisations who can help you if you want to find out more or need further support.

The Children and Families Act 2014

A Local Authority must have regard to... the need to support the child and his or her parent, or the young person, in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes.’

Children’s and Families Act, Part 3, 19 (d).

In September 2014, the Children and Families Act 2014 came into effect in England. This is ‘statute law’ or a legal framework that is passed by Parliament. The legal rights of children and young people with SEND are set out in Part 3 of the Children and Families Act. To read it, go to: www.legislation.gov.uk/ukpga/2014/6/part/3/enacted.

The SEND Code of Practice 2015

‘[Local authorities and other organisations] must have regard to the Code of Practice. This means that whenever they are taking decisions they must give consideration to what the Code says. They cannot ignore it. They must fulfil their statutory duties towards children and young people with SEN or disabilities in the light of the guidance set out in it.’

SEND Code of Practice 2015, page 12.

You may have also heard people refer to the ‘Code’ or ‘Code of Practice’, which is the Special Educational Needs and Disability Code of Practice 2015, which is the statutory guidance on duties, policies and procedures relating to the Children’s and Families Act.

It sounds complicated but, to put it simply, the Code is what organisations such as local authorities, schools, early years providers, NHS trusts and clinical commissioning groups must comply with (unless there are exceptional reasons not to). The Code is divided up into chapters, covering areas such as Early Years education, schools, preparing for adulthood and Education Health Care Plans (EHC Plans). So although It is a long document, you don’t have to sit down and read it all. You can look at the parts that are relevant to your situation. It is especially useful for the EHC Needs Assessment process, as it explains all the steps and the timeline that must be followed.

To look at the Code go to: www.gov.uk/government/publications/send-code-of-practice-0-to-25. An easy read guide is also available at: www.gov.uk/government/publications/send-support-easy-read-guide-for-parents.

Regulations and Case Law

There are two other parts to the legal jigsaw. The first is regulations for SEND law, these are the Special Educational Needs and Disability Regulations 2014 and the Special Educational Needs (Personal Budgets) Regulations 2014, which contain detailed provisions, including time limits, that organisations must follow. The regulations can be amended and in fact have been several times since they were passed. For more, go to:

www.legislation.gov.uk/uksi/2014/1530/pdfs/uksi_20141530_en.pdf and: www.legislation.gov.uk/ukdsi/2014/9780111114056.

The final part of our legal jigsaw is Case Law. Where the law is ambiguous and a case has been brought to court, the judge’s interpretation of what the law intends can become part of the law for others to follow. This is known as ‘case law’. Often, lawyers bringing a case to court will use relevant examples of case law (or ‘precedent’) to strengthen their argument.

The Equality Act and schools

Under the Equality Act, 2010 education settings have a duty not to discriminate against disabled pupils and prospective pupils in the way they provide education and ‘associated services’. It also applies to admissions to school and exclusions. This means that they must not treat your child less favourably than other children for a reason related to their disability. If they do treat a disabled child less favourably, they have to prove this was justified and there was nothing they could have done to avoid it. They also have to take reasonable steps to ensure that disabled children coming to the school will not be put at a substantial disadvantage compared to other children.

The definition of ‘disabled’ is not the same as ‘special educational needs’, but can cover conditions we might not think of as a disability, such as dyslexia or emotional and behavioural difficulties, if they cause a substantial adverse effect on the child’s day-to-day activities. It is worth noting that areas covered by the duty not to discriminate are quite wide. They include: school trips; after-school clubs; play; lunchtime arrangements; and access to the school curriculum.

The Equality Act 2010 gives guidance to schools about what they should do and includes examples of situations where a parent could use this law to protect their child’s interests. You can find more about the Equality Act 2010 and education at: www.csie.org.uk/inclusion/equalities-act-2010.shtml.

Who can I turn to for education advice?

There are many organisations offering parent carers advice on SEND law and education issues. Nationally, IPSEA has a helpline offering a call back service to parents who need advice, as well as resources and model letters to send to local authorities and schools. It also offers training courses for parent carers, professionals and schools to help them to understand the SEND legal framework. For more information go to: www.ipsea.org.uk.

The Council for Disabled Children has many useful resources, including information on latest Case Law. For more, go to: https://councilfordisabledchildren.org.uk/resources.

Organisations such as Contact (https://contact.org.uk), SOS SEN (www.sossen.org.uk) and Special Needs Jungle (www.specialneedsjungle.com) also have a wealth of information on their websites and Contact also has a helpline for parents. NASEN (www.nasen.org.uk) and Network 81 (www.network81.org.uk) are useful sources of support and often, they have informative publications, too.

Some organisations such as AFASIC (www.afasic.org.uk); the Down’s Syndrome Association (www.downs-syndrome.org.uk); the British Dyslexia Association (www.bdadyslexia.org.uk); Mencap (www.mencap.org.uk); and the National Autistic Society (www.autism.org.uk) have considerable expertise in this area and will support parents with education matters.

Campaigning organisations such as the Alliance for Inclusive Education (www.allfie.org.uk) and the Centre for Studies on Inclusive Education (www.csie.org.uk) may be particularly helpful for parents who feel strongly about their children being educated within mainstream schools. ACE Education (www.ace-ed.org.uk) has information and advice on a wide range of education issues on its website and also runs a helpline that you can call for advice on: 0300 0115 142.

Locally, West Sussex SEND Information, Advice and Support Service (SENDIAS) offers information, advice and support to parents who have a child with SEND. They are an ‘arms length’ service, which means although they are funded by West Sussex any advice they give is impartial, confidential and free. SENDIAS provides a range of services including: a confidential helpline; information and resources related to SEN processes; and a small team of volunteers. To find out more, call: 0330 222 8555 or email: send.ias@westsussex.gov.uk. SENDIAS also have Young Person Advisers who can support young people with SEND and help them express their wishes. Email: cyp.sendias@westsussex.gov.uk.

Because education is complex and often problematic for parents, it’s important you get independent help if you need it, especially if you are in disagreement with your child’s school or the LA. If you are on a low income, you may be able to get free legal advice from a solicitor.

Covid-19 and education

The Covid-19 pandemic has massively impacted education for all children and young people, but the effects have been particularly marked for families of children with SEND. From April to August 2020, emergency Coronavirus legislation gave schools and local authorities some flexibility for example around the timescales for completing EHC needs assessments and plans and annual reviews. This has now ended, and your child’s usual rights have been restored.

If you have concerns about Covid-19 and your child’s education, there are resources on our website, www.reachingfamilies.org.uk. You may also find it useful to refer to the information Amaze has published on their website: https://amazesussex.org.uk/coronavirus-advice.

What support is available in education?

Educational support for very young children

Most children under two can benefit from the facilities available for all very young children, such as parent and toddler groups and other activities available at children and family centres/family hubs, music groups or soft play sessions (see the Social Life chapter for more on this).

Children and Family Centres/Family Hubs

Currently, Children and Family Centres are operating throughout the county and offer many of the services previously listed. In January 2022 there will be a relaunch with twelve Family Hubs serving the county instead – to find your local centre or hub go to: www.westsussex.gov.uk/fis and click on ‘family activities and support’ then choose ‘children and family centres.’ (Note ‘family hubs’ when they are launched in January 2022.)

To find out what additional support might be available to your family go to: www.westsussex.gov.uk/fis and click on ‘family activities and support.’ In the next window, select ‘family activities’ then enter your postcode and click on ‘SEND activities’ or ‘SEND support’ from the drop-down categories Alternatively, you can call the Integrated Front Door, or speak to your health visitor, GP, or West Sussex Young Carers to find out what is available.

Dame Vera Lynn Children’s Charity (DVLCC)

Based in Cuckfield, West Sussex, DVLCC offers an early intervention service for families with children aged from birth to five years with cerebral palsy and other motor learning disabilities.

The service follows the principles of Conductive Education and Early Years Foundation Stage and is delivered in partnership with parents to educate and help their child develop physically, socially and emotionally, forming the bedrock of the independence they can achieve later in life.

Messy play and sensory play are incorporated into sessions and additional services such as music therapy and swimming sessions are also offered to families. Full details and a programme of events can be found on the website: www.dvlcc.org.uk.

Portage

The West Sussex Portage Service is a home visiting educational service for preschool children with significant support needs. Portage works alongside parents offering practical help and ideas to encourage children’s emerging skills, which include moving, learning, playing, being with people and sharing the routine activities of everyday life. Portage offers a framework of support from which a family can choose whatever is most helpful to them. It is as flexible as each family needs it to be and builds on what the child can do.

Portage is free to families and is supervised by the West Sussex Educational Psychology Service. Referrals can be made by parents or anyone involved with a child with parental consent. All home visitors are trained to National Portage Association standards.

‘Portage has helped me become more positive about my child and her development. Celia herself is a lot more responsive to everything and really enjoys the activities.’

Enabling Families

This service provides support for families with issues such as behaviour, play, healthy lifestyles and parenting difficulties. An Enabling Families appointment can identify whether a family may need further targeted support such as Early Help. You can arrange an Enabling Families appointment by calling the Integrated Front Door, or ask your health visitor, GP, midwife or preschool.

Funding childcare

Many parents worry about funding childcare for their children. However, there are a number of schemes to help parents including Free Entitlement Funding, which provides free hours of education and care for all three and four year olds and some two year olds who receive DLA, or have parents that receive certain benefits. The Government also offers Tax-free Childcare, a scheme that is run for working parents. For more information on both schemes, go to the Money Matters chapter.

Childcare inclusion

West Sussex County Council provides advice, guidance and training for early years and childcare practitioners to enable children with additional needs to attend mainstream provision. The local advisory team helps practitioners to develop the expertise and to make the necessary adaptations to support the learning and development of children in their care. This may include visits to settings before a child starts to ensure plans for their inclusion are in place.

Where appropriate, funding may be made available to settings in line with criteria to enable the needs of individual children to be met. Funding is also made available to supply mobility equipment where this is recommended by health professionals, to support a child’s inclusion.

The Disability Access Fund is available to three and four year olds who receive DLA and Free Entitlement Funding. Early years’ settings must identify children who are eligible. They can then apply for a one-off annual payment of £615 to help them to support the child and meet their individual needs.

SEND Under Fives

If you have concerns about your child’s development, their behaviour or their learning you might want to have a chat to your doctor or health visitor. If your child is already at nursery or preschool you could talk to staff there about your concerns.

If a professional feels that your child has or may have additional needs, they might refer them to the ‘SEND Under Fives’ support process, previously known as Early Years Planning and Review Meetings (EYPARMs). SEND Under Fives aims to identify children who have, or may have, SEND so they can be offered the appropriate support in their early years setting and for their school transition.

Various professionals are involved with helping children identified by SEND Under Fives, including those running the Healthy Child Programme, Early Years and Childcare Advisers, Portage co-ordinators, the Speech and Language Therapy service (SALT) and other health care professionals.

Once a child is referred to the SEND Under Fives Support Process, the following might happen:

- Stage 1: early identification and an offer of support that could include access to local groups, referral to Portage, and/or support to find and access early years provision.

- Stage 2: support for your child and staff in their early years’ setting. This might include help from Early Years and Childcare Advisors (EYCAs) and Speech and Language Setting Support (SALSS). Information will also be gathered by staff and professionals to inform next steps for your child.

- Stage 3: identification of children who need additional support to that which is ordinarily available, to go forward to an Education Health and Care Needs Assessment (EHC Needs Assessment). Gathering of evidence to share with the Special Educational Needs Assessment Team (SENAT), or the planning of transition support for children moving on to school.

What happens when my child is discussed?

SEND Under Fives are multidisciplinary meetings (this means they are attended by professionals from different services such as the local authority, an educational psychologist, speech and language therapy and a paediatrician, for example).

The meetings are designed to ensure that there is appropriate discussion, planning, review and, if necessary, further assessment for preschool children who are likely to require additional support within their education setting. Often, the most helpful time for their ongoing needs to be assessed is as they approach school age.

Requests for a child to be discussed may come from a range of professionals working in health services or education. Children are only discussed when parents give signed permission for a discussion to take place. In order to review your child, the views of those who work with you and your child will be sought. Practitioners that work with you and your child and attend these meetings will be able to share your views in the meetings. If the SEND Under Fives groups begin to gather information to consider formal assessment, you will be given a Parent/Carer pack to fill in so that your views will be taken into consideration, too.

Not all children who are referred to SEND Under Fives go on to have further assessment such as an EHC Needs Assessment, as for some it may be decided that their needs can be met via SEN Support via their education setting instead.

Who will be present at the meeting?

SEND Under Fives is a meeting that brings together professionals such as paediatricians, speech and language therapists, educational psychologists, Early Years and childcare advisors, Portage coordinators, and other health professionals. The meeting is chaired by an Early Years and Childcare Advisor.

It’s worth noting that the professionals at the meeting may not have worked directly with your child, although if their team is involved with your child they will represent the views of colleagues who do see your child to give an update on their progress and needs.

What might be discussed?

SEND Under Fives enables professionals to work together with families in the following ways:

- To help the co-ordination of services and support to families of children with SEND, using the Early Support Approach.

- To support children with SEND to access Early Years education alongside their peers, which will enable them to make progress in their learning and development.

- To plan changes, for example from preschool to school, to ensure children with special educational needs receive the support they need throughout their early years.

- If a Needs Assessment is being considered, written reports and information about your child will be gathered from the professionals working with you and your child to understand more about their needs.

What might happen after the meeting?

Outcomes from a SEND Under Fives meeting include:

- Support to access services such as Children and Family Centres/Family Hubs and local groups, including voluntary organisations

- Referral to Portage

- Support to access Disability Living Allowance (DLA)

- Support to access Early Years provision, which could include providing additional funding or equipment and support with the transition process

- Support to the early years setting to help a child to make progress in their learning

- Gathering evidence to decide if it is appropriate to request a formal Needs Assessment

- Supported transition to school.

Support in preschool and school

When your child is at preschool or school, their special educational needs can be supported in a number of ways. Most children will be helped through SEN Support, but some children with more complex needs are supported by an Education Health and Care Plan (EHC Plan). This section will give you a brief overview of how these two types of support are put in place and how they help children.

SEN Support

If it has been identified that your child has special educational needs, your child’s key worker in early years settings, or school teacher will work with the Special Educational Needs Coordinator (SENCO) to gather information and find ways in which they can help your child. This is known as ‘SEN Support’.

Schools receive additional funding to support children with SEND who do not have EHC Plans. All settings should have a graduated approach to support – West Sussex has a document that it sends out to early years settings, schools and colleges which sets out the local authority’s expectations that the setting will carry out their ‘best endeavours’ duty to provide additional support for children with additional needs, prior to requiring an EHC Plan. The graduated approach has four action stages:

- Assess – analyse what the child’s needs are.

- Plan – work out what support to offer and how. This could be a special programme of work, particular equipment, time with a teaching assistant or teacher individually, or in a group. The planning should include the outcomes they expect to see from this support and a clear date for review.

- Do – the preschool staff, class teacher or subject teachers put the plan into action, supported by the SENCO.

- Review – look at whether the support is working. Revise the plan in consultation with parents and the child.

The idea is that this cycle keeps happening for as long as the child needs SEN Support and, if they do not make the expected progress, things should intensify, perhaps by getting expert advice to assess in more detail, or by planning more or different support. This may involve getting the input of specialist services such as the Autism and Social Communication Team or Educational Psychology service, for example.

Parents should be involved at every stage. A record of the support to be given and the outcomes that support is meant to achieve should be shared with you. There are no specific rules about how a school should write this record but you must also get an annual report on your child and a face-to-face meeting at least three times a year. If your child needs more support, these records can be useful to submit as part of your evidence for an EHC Needs Assessment, which may lead to the production of an EHC Plan.

Children can get a significant level of extra help on SEN Support which may include one-to-one help if it is needed in order for them to access education. SEN Support should also include planning for transition, such as when a child moves from nursery to primary school, for example, so that information is shared between the current and the new setting.

Specialist services to support children’s learning

The local authority has a number of specialist services, each offering expert advice and information to mainstream schools. Most of these services have a team of specialist teachers who can work directly with pupils, but usually concentrate on helping the school staff plan and deliver help for their pupils.

Educational Psychology Service

The Educational Psychology Service provides specialist advice around a child’s learning, well-being, and behaviour in their school placement. Referrals are made by the education setting or the Special Educational Needs Assessment Team (SENAT).

Sensory Support Team

The Sensory Support Team works with children, families and schools to support and promote the inclusion of children with sensory needs: hearing; visual impairment; or multi-sensory impairment; in a range of settings.

The team provides a range of support including direct support to children in Early Years, providing advice and direct teaching in schools, supplying specialist technologies on an individual basis to improve access to the curriculum, providing specialist advice and support during assessments.

Referrals can be made by professionals or parents but the team advises that if parents have a concern about their child’s provision they should first discuss with their school or setting.

Autism and Social Communication Team

The Autism and Social Communication Team provides advice, training and support to schools to promote the educational, social and emotional development of children and young people with autism. With parental permission, the team accepts referrals from school SENCOs or head teachers.

Education, Health and Care Plans (EHC Plans)

An Education, Health and Care Plan (EHC Plan) outlines a child’s special educational needs; what outcomes are wanted for the child and what special provision is needed to achieve these outcomes. It is designed to be holistic, so it should also cover any health care and social care needs and outline provision to meet these needs and outcomes to work towards.

All local authorities have a legal duty to secure the special educational provision in an EHC Plan and the health service (usually the local clinical commissioning group) has a legal duty to arrange the specified health care provision.

Does my child need an EHC Plan?

Children can get significant amounts of help on the first level of help known as SEN Support at school or preschool, so may not necessarily need an EHC Plan. However, if your child has been getting help on SEN Support and does not seem to be making reasonable progress, it may be necessary to apply for an EHC Needs Assessment.

If it is felt that their current placement cannot meet their needs and your child would be best supported in an alternative setting such as a special school, unit or independent specialist provision, an EHC Plan will be required in order for them to be placed there. However, in exceptional circumstances the local authority may agree to a child being placed in a special school while an EHC Needs Assessment is carried out.

The process of an EHC Needs Assessment can shine a light on a child’s needs and bring together expert advice on this to give a fuller picture of how they need to be supported. At the end of the process, if it is decided that an EHC Plan is appropriate, this will set out their needs and the provision that should meet those needs in a document that also has some legal weight.

‘It has the reputation of being a long, drawn-out and daunting process full of complications. In practice it wasn’t half as bad as I expected. So grit your teeth and go for it!’

What about children without a diagnosis?

For many of us, it was only after our children started at playgroup or nursery that our children’s additional needs became apparent. It is estimated by the Genetic Alliance UK that 50 per cent of children with a learning disability are without a definitive diagnosis. Despite this, if it has been identified that a child has additional needs, they should still receive support at their educational setting.

The SEND Code of Practice 2015 sets out how early education settings and schools should identify and support children with special educational needs. For the majority of children, their additional needs can be met through SEN Support by staff within the setting. However, if it becomes apparent that your child’s needs are not being met through SEN Support, it may be suggested that an EHC Needs Assessment should be undertaken.

Some parents are under the impression that their child can only have an EHC Needs Assessment if they have a diagnosis, but this is not the case. The support a child is entitled to is based on need rather than a diagnosis.

Requesting an EHC Needs Assessment

In this section, to keep things straightforward we will refer to the education setting as ‘the school’, but the advice is also relevant for Early Years settings and colleges.

The first step is to make a request to the local authority (LA) asking them to consider carrying out an EHC Needs Assessment of your child. It involves getting advice from a range of professionals, the parents, and child or young person, to decide if an EHC Plan is needed.

A request for an assessment can be made by the parent, young person (if they are over 16), or school. You can do this by contacting the appropriate West Sussex SENAT Team:

- North – covers the northern part of the county, including Burgess Hill, Crawley, Cuckfield, East Grinstead, Haywards Heath, and Horsham. Email: SENAT.North@westsussex.gov.uk or call 0330 222 2722.

- South – covers the southern part of the county, including Angmering, Bognor Regis, Chichester, Hove, Midhurst, Littlehampton, Petworth, Portslade, Shoreham, Steyning, and Worthing. Email: SENAT.South@westsussex.gov.uk or call 0330 222 3120.

If you want to be sure this will be recognised as a formal request for an EHC Needs Assessment you will need to put it in writing and refer to Section 36 (1) of the Children and Families Act 2014. This may sound daunting, but it is quite straightforward – if you are not sure what to write in the letter, you can go to the IPSEA website, where you will find letter templates that you can use, as well as many other useful resources to guide you through the EHC assessment process. Go to: www.ipsea.org.uk.

You can also receive support from West Sussex SEND Information, Advice and Support service (SENDIAS), Go to: https://westsussexsendias.org.

When the local authority receives the request, you will be given the name of a Planning Coordinator in the SEN team, who will be responsible for your child’s case. They will be your key point of contact, but do not do the decision-making. Decisions are made on the recommendation of a SEN panel that meets regularly. The panel ensures that the local authority makes fair and consistent decisions. Panel members include: a manager from the SEN team; a senior educational psychologist; representatives from schools and health care.

There are strict time limits about assessment and producing EHC Plans. The whole process from request to final plan should take no more than 20 weeks. The LA has up to six weeks to make their decision about whether to go ahead with an EHC Needs Assessment. Again, you can find detailed resources, including a timeline of what should happen and when, on the IPSEA website. You can also contact West Sussex SENDIAS for information and advice. If you made the request for an assessment, the SEN team will contact the school for information. If the school made the request you will get a letter that asks for your views.

At this stage the local authority’s decision will be based on the information sent by you and the school. The SEND Code of Practice 2015 says the test is whether ‘it may be necessary for special educational provision to be made for the child in accordance with an EHC plan.’

The panel will first consider whether all possible support has been given through SEN Support by the school. So they may turn down a request for assessment if they feel that there is still more that the school could do in order to meet the child’s needs via SEN Support.

By the end of the six weeks, the LA will send you their decision. If they decide not to assess, you have a right to appeal. We have a section later about appeals to the SEND Tribunal, but before this happens, the planning coordinator should contact you to let you know the decision. SENAT will also inform your child’s education setting of the decision and, where required, a meeting can be arranged to discuss the decision.

If you are considering an appeal, you might want to discuss this with your planning coordinator– they may refer your concerns to colleagues to try to resolve things without the need for an appeal. It is also a good idea to go over the evidence that was supplied, to check that there is nothing missing from the information on which the decision was based.

How will an EHC Needs Assessment be carried out?

If it is decided that an assessment should be carried out, the local authority must complete this by week 16 and, either issue a draft EHC Plan, or tell you they have decided not to issue one.

The aim of the EHC Needs Assessment is to look at the outcomes that will enable the child to progress in their learning and towards adult life, then work out what education, health and social care provision is needed for the child to achieve these outcomes.

To make the assessment the local authority must ask for advice and information from: parents or the young person if they are aged over 16; the school or education setting; health professionals involved with the child; an educational psychologist; social care agencies; and anyone else you reasonably request.

There is limited space on the parental views booklet, but if you feel you need to give more information, you can continue onto separate pages and attach them to the document – make sure that your child’s name and date of birth is shown on the additional sheets. It is important to be as thorough as you can, because the local authority needs a full picture in order to make a good decision. If you have additional reports about your child, you can attach them as part of your parental advice and information. If the reports are up-to-date, the LA should use these and not ask for new ones.

‘The physio at the special clinic that she goes to and the playgroup did a report as well. Basically, I asked, “Would it be possible to do an assessment report and have it ready, so as soon as the LA officially asks, you can send it straight away?”’

If the local authority decides an EHC Plan is not needed they must write to you by week 16 explaining their decision and your right of appeal. They should also provide written feedback about the information gathered during the assessment, including all the reports, as these can be useful for you and the school. There will also be a meeting held to which you will be invited.

If the local authority decides an EHC Plan is required, they must send you a draft of the plan, together with copies of all the reports they have received. There is no fixed time limit for this, but it should be by week 16 to ensure the final plan is complete by week 20. Local authorities can choose the format for their EHC Plan but the law details the sections that every plan must include.

When the draft is issued you will notice that the section regarding placement does not name a school, as you have the right to request a particular school or type of school. The local authority must tell you where to find information about the schools and colleges that are available for your child to attend.

You have 15 days to decide if you’re happy with the draft plan. It is very important that you make use of this time to check it thoroughly. Does it describe your child accurately? Is it specific enough that any school could read it and know what your child needs? Check that all the support identified in reports have been added to the provision section. Are you happy to agree the Personal Budget (see below for details) in the plan if you asked for one?

At this stage, you are entitled to request a meeting with your planning coordinator to discuss the draft plan. However, parents usually only ask for a meeting if they have serious concerns with the EHC Plan. If you only want to make minor changes you should be able to sort these out over the phone or by email.

Although the local authority usually asks for plans to be finalised within 15 days, if you feel that you need more time to think about the wording and take advice from organisations such as SENDIAS or IPSEA, it is best to email your coordinator to say that you need more time. Some parents may worry about doing this, however, it is important to ensure that you are happy with the EHC Plan and its contents, so you should not feel under pressure to finalise before you’ve had chance to seek advice.

By week 20, the LA should issue the final plan. This will name a school, and the amount and arrangements for a Personal Budget if you requested one. If you disagree with the final plan you have a right of appeal about some sections – for more, see here.

Person-centred planning

A key aspect of EHC planning is that the child or young person and their family should be at the centre of the process and the local authority should have regard to their wishes. This is called ‘person-centred planning’ and it ensures that your child’s education gives them the best possible outcomes to prepare them for adulthood. You have the right to be with your child at all interviews, medical tests or any other appointment. If a professional wants to observe your child in the classroom, or talk to them on their own, they should tell you that they are doing this.

What are outcomes?

An EHC Plan will develop a set of outcomes for your child to work towards. Outcomes should be ‘SMART’ – this means they should be ‘Specific, Measurable, Achievable, Realistic and Time-bound.

The Plan is broken down into different sections. It identifies a child’s aspirations (what they want), their needs, the provision (support) they need to meet the needs and the outcomes that the provision will help them work towards and hopefully achieve. Some outcomes will be short-term. Others may be longer term, and could be broken down into smaller steps so that your child can make steady progress. For example:

- Thomas wants to have friends (an aspiration)

- Thomas has social communication difficulties (a need)

- Thomas will take part in a thirty-minute weekly social skills group (provision)

- By the end of the school year Thomas will play with two friends at break or lunch time at least twice a week (short-term outcome)

- By the end of Key Stage 3, Thomas will be able to make and maintain appropriate friendships (long-term outcome).

These outcomes are SMART, because they are specific. They are measurable, as staff will be able to document if the interactions are happening. They are achievable and realistic, as they have been broken down into steps to help Thomas to work towards the long-term outcome. They are time-bound, as we know when they should be achieved.

Personal Budgets

You have the right to ask for a Personal Budget as part of the EHC Plan. A Personal Budget is an amount of money identified by the local authority to deliver parts of the provision set out in your child’s EHC Plan. It gives you the flexibility to choose which services and support to use in order to meet your child’s outcomes. You can find out more about Personal Budgets here.

What type of education setting might be considered?

Mainstream schools: most children with an EHC Plan will still be educated within mainstream settings. Indeed, some parents feel strongly that they would like their children to be educated at their local mainstream school, particularly if they have siblings attending as well. The right for your child to be educated in a mainstream setting is supported in law, in section 33 of the Children and Families Act 2014, which says that a child or young person with an EHC plan must be educated in a mainstream setting unless:

1. it is against the wishes of the child’s parent or the young person; or

2. it is incompatible with the provision of efficient education for others and the LA

Specialist units/special support centres: for children whose needs are more complex, it may be more appropriate for them to be placed in a specialist unit within a mainstream setting, which are often known as ‘special support centres’ (SSCs).

More than twenty mainstream schools in West Sussex have specialist units that cater for children with specific needs such as autism, language difficulties, hearing impairments, specific learning difficulties or dyslexia. Children spend some of their time in mainstream classes and some in the unit or facility. You can find a list of West Sussex schools with special support centres in our Education Directory.

Special schools: there are twelve special schools in West Sussex, catering for a range of special educational needs and disabilities. There are schools for children with complex needs, mild to severe learning difficulties and social, emotional and behavioural difficulties. Most children at special schools attend full-time, but some may have a dual placement with time spent in a mainstream school, too. For a list of special schools, go to: www.westsussex.gov.uk/education-children-and-families/schools-and-colleges/find-a-school-academy-or-college, or see the Education Directory.

Unless there are exceptional circumstances, a child will need to have an EHC Plan to be placed in a specialist unit or special school.

Independent placements: occasionally, a child may require a placement within an independent specialist school, for example if they have extremely complex social, emotional or mental health (SEMH) needs. Independent placements are costly, and are only considered if a child’s needs cannot be met elsewhere in the county. Placements may be out of county, and/or residential. Some independent specialist schools are only available to children from Key Stage 2 (usually aged 7).

You will find a list of independent specialist schools in England and Wales that have been approved under Section 41 of the Children and Families Act 2014 to offer special schooling and non-maintained special schools (NMSS), which have been approved under section 342 of the Education Act 1996 to offer special schooling at the following link: www.gov.uk/government/publications/independent-special-schools-and-colleges.

Requesting a particular school

You have the right to request a particular school or college if it is:

- a maintained mainstream or special school or nursery school. This includes academies and free schools.

- a Further Education or Sixth Form College.

- a non-maintained special school – these are usually run by charities and approved under section 342 of the Education Act 1996.

- certain independent special schools approved by the Secretary of State under section 41 of the Children’s and Families Act 2014.

The local authority has to agree with this unless:

- It would be unsuitable for your child’s age, ability or special educational needs.

- Your child’s attendance there would be incompatible with the efficient education of others, or the efficient use of resources – meaning it costs significantly more than an alternative school that the local authority thinks is suitable for your child.

For more on EHC Plans, naming a school and what the law says go to: www.ipsea.org.uk/choosing-a-schoolcollege-with-an-ehc-plan. Find out more about how to choose a setting for your child.

Tips for coping with the EHC Needs Assessment process:

‘My memory is terrible, especially for names and I spoke to so many people during the assessment. I was worried I’d forget who was who, so I jotted notes down on a pad: date, time, name and bullet points of what was said. It made me feel more in control.’

- Be polite but persistent.

- Involve yourself as much as possible with the professionals dealing with your case. Don’t be afraid of them, they are normal people and not to be avoided

- Make a note of the name and contact information of the professionals dealing with the EHC Plan or writing reports on your child.

- Make sure you are sent a copy of each advice or report. Keep a file just for these.

- When dealing with the local authority or professionals involved in writing reports it is advisable to speak to them via email, so that you have a ‘paper trail’ of what was said and by whom.

- If you do anything by phone, always take the person’s name, note the date of the call and what was discussed. If you are told something significant, ask for confirmation in writing, or send a brief email to them noting what was said or agreed.

- Get as much help and advice as possible. Don’t be afraid to ask other parents who have been through the assessment process for tips. You can also contact organisations such as IPSEA, Contact or SENDIAS for further advice.

- Don’t forget it’s your child; you know your child better than anyone. You need to hear what professionals say and consider all the options, but be ready to stick to your guns if need be!

Annual reviews

Your child’s EHC Plan must be reviewed by the local authority every 12 months as a minimum. You should get at least two weeks’ notice of the meeting and you can take someone along with you if you wish. Your child should also be actively involved in a way that best suits them.

Annual reviews are usually held at the school. The other people who must be invited are the school, the local authority planning coordinator and a representative from both health and social care. Other people involved in working with your child, including private practitioners, can be asked too.

Not everyone attends the annual review but everyone who is relevant (including you as parent) should be asked for their advice and information about the child beforehand. This should be sent to you two weeks before the meeting. It’s important that you have the chance to read these reports before the review so that you can think about what you would like to get from the meeting. If you don’t get them in enough time you can ask to postpone the review.

The school will usually arrange the annual review meeting and report to the local authority after so they can complete the annual review process. The meeting must focus on your child’s progress in meeting the outcomes in their EHC Plan. In particular, are any changes needed in the support they get to help them achieve their outcomes? Have the child’s needs changed? Do the outcomes need updating? Within two weeks of the meeting the school must send a report to the local authority. You should get a copy. Check it over to make sure it matches what was said or agreed at the review. Within four weeks, the local authority must decide on one of three things:

- to continue with the existing EHC Plan.

- to amend or change the EHC Plan.

- to withdraw or ‘cease to maintain’ the EHC Plan.

If the local authority decides to change the EHC Plan, there is a process with time limits that allow for you to comment and appeal their decision if you don’t agree. It is important to understand that an EHC Plan can only be changed through the annual review process. If the LA decides to withdraw the EHC Plan you can appeal if you disagree. You can also appeal if the LA decides not to amend the plan after the annual review and you think it should be changed.

Changing schools with an EHC Plan

If you want your child to change school, other than the usual move from primary to secondary school, you will have to ask the local authority to change the name of the school in your child’s EHC Plan. You have the right to ask for another West Sussex maintained school – mainstream or special – as long as the school you are requesting is like-for-like, and it’s at least 12 months since you last made a request or since your child’s EHC Plan was issued or last amended.

The local authority has eight weeks to consider your request and you can appeal if you are unhappy with their decision. You don’t have the right to ask for a move to an independent special school, but if you feel this is what your child needs, you can request that the local authority reassess your child.

If you move out of West Sussex, the new local authority must honour your child’s EHC Plan and place them in an appropriate school while they are deciding whether to review your existing EHC Plan or undertake a new assessment. If your child is at an independent placement funded by the local authority, the new local authority must continue to pay the fees until they change the EHC Plan.

‘When we wanted to get him out of the SLD school into an MLD, it was a terrific struggle, but we had a very good EP, she was absolutely outstanding, and the speech therapist was very helpful, too. We really pushed and pushed, and we were lucky, we did get him into the MLD school.’

Transfer between phases of education

When your child is due to move from one phase of education to the next, such as from preschool to primary school, or primary to secondary school, there are special rules. The annual review must happen early enough to allow time to plan for the move. The EHC Plan must be amended by the 15th February of the year the child is due to transfer to a new setting. If they are moving into Further Education, the deadline is 31st March. See here for more about Further Education.

The amended EHC Plan must name the new school or college. The aim is to allow everyone time to plan for a smooth transfer. For a child coming to the end of primary school, the annual review in Year 5 should detail what they will need at secondary school so you have time to look at the options. A review early in Year 6 should pull this together for the local authority to complete the amended EHC Plan by 15th February. This leaves plenty of time for liaison between the primary and secondary school, visits, organising staffing or equipment and so on. It also allows time for an appeal if you are unhappy, and for this to be resolved before September.

Preparing for adulthood in annual reviews

From Year 9 onwards, each annual review should focus on preparing for adulthood and look ahead at what will help the young person move towards things like employment and independent living. This is covered in more detail from here onwards.

Review or re-assessment?

If you feel your child’s EHC Plan needs changing you can usually address this at annual review. However, there may be circumstances when parents think their child requires a whole new EHC Needs Assessment, for example, if they and the local authority are not seeing the child’s needs in the same way, or if the child’s needs have changed significantly. If you or the school request re-assessment the local authority has 15 days to say whether they agree. If they refuse you have the right to appeal. If they do go ahead, the process and timescales are the same as for initial assessments.

Appealing to the First-tier Tribunal (SEND)

We have mentioned a few points at which parents have a right of appeal to the First-Tier Tribunal (Special Educational Needs and Disability). This is often known as the ‘SEND Tribunal’.

If you don’t agree with the local authority it is usually worth having at least one more try at resolving things locally. You can always ask for a meeting with your Planning Coordinator and the SENAT manager. You can also ask SENDIAS for support with this.

Before you can lodge an appeal to the tribunal you have to prove that you have discussed the possibility of mediation with a mediation adviser. Should you choose to go ahead to tribunal without using mediation, you must send in a ‘mediation certificate’ with the appeal paperwork to show that this option has been considered.

For some issues you will not have to consider mediation – for example it does not apply if you only wish to appeal the school placement named in section I of the EHC Plan. With this, you can go straight to the SEND Tribunal.

Tribunal appeals

The First-tier Tribunal (SEND) is an independent body that hears parents’ appeals against local authority decisions on EHC Needs Assessment and EHC Plans. It also deals with some claims of unlawful disability discrimination in education.

There are strict timetables for making an appeal and these differ for SEN appeals and disability discrimination claims. It’s vital to get advice as early as possible if you are considering appealing.

You can appeal to the First-tier Tribunal (SEND) if:

- The LA refuses to assess your child after you or the school have requested this.

- The LA decides an EHC Plan is not needed after assessing your child.

- You disagree with the EHC Plan sections that describe your child’s special educational needs, the special educational provision specified, the school, or type of school named.

- You disagree with an amendment to any of these sections.

- The LA refuse to reassess your child (although it’s important to note that if an EHC Needs Assessment has been conducted within the last 6 months the local authority is under no obligation to reassess. A request to assess after 6 months is treated as a new request).

- The LA decide not to amend the EHC Plan after review or reassessment.

- The LA decides to cease maintaining the EHC Plan.

In these cases, the tribunal can order the local authority to change their decision.

Since April 2018, the First-Tier Tribunal (SEND) has been conducting a national trial where its powers were expanded so that health and social care sections of the EHC Plan could also be considered as part of an appeal. At the time of writing, the trial has once more been extended, but there has been no decision on whether this will be made permanent. It’s also important to note that, despite this change, an appeal going to tribunal must always have an educational component. If your appeal relates only to health or social care you should use disagreement resolution and/or mediation and then use the relevant complaints procedures if necessary.

The First-Tier Tribunal (SEND) can make orders to change sections of an EHC Plan relating to education sections (B, F and I). It can also make recommendations to change the health sections (C and G) and social care sections (D, H1 and H2) of a plan. Although these recommendations are non-binding, there is the expectation that they will be followed. If the relevant professionals – the local authority for social care and the clinical commissioning group (CCG) for health – decide not to follow the recommendations they must write to parents and the tribunal within five weeks to explain why. If you are unhappy that they have chosen not to follow the recommendations, you can complain to the Local Government Ombudsman (LGO) or go to judicial review.

Going to tribunal is a stressful experience and not to be undertaken lightly. It is the last resort for parents who have been unable to resolve matters with the local authority in any other way. Parents who decide to go to appeal need to have energy and endurance, be well prepared and have access to the best possible advice and support.

While the tribunal encourages parents to represent themselves and will take care to treat you fairly, many have found it a daunting experience. If you cannot find someone able to help you prepare your appeal, you can ask SENDIAS for support as all their advisers have legal training.

‘Our SENDIAS adviser was extremely knowledgeable with regard to the information we had to include in our appeal... without her we would have been completely lost.’

Alternatively, you may think about instructing a solicitor but this can be costly. If you take this route make sure they specialise in education law. You may qualify for free legal assistance, so be sure to ask about this and the fees, before going ahead.

‘It was an awful hassle to go to appeal, but it was important that the integrated activities he was having should continue. We just had the energy to do it, I suppose.’

If you feel your child has been discriminated against on the grounds of their disability, you should start by complaining to the head teacher and governing body of the school. If this does not resolve the matter, you can make a claim of unlawful discrimination against a school on behalf of your child to the First-Tier Tribunal (SEND). Some claims of unlawful discrimination will go to admissions appeal panels or, for exclusions, to independent appeals panels.

How to choose a setting for your child

When considering an education setting for your child, you will be looking for a placement where they will be able to learn and develop in confidence and independence.

Choosing a preschool setting

If your child’s SEND has been identified early, then this will be a key factor in deciding what type of setting will best suit their individual needs. However, with the right support in place, most children with SEND are able to go to local playgroups, preschools, nurseries and nursery classes in mainstream schools.

All playgroups and nurseries should welcome children with SEND but their experience and facilities vary. You can find out more about childcare settings through the Family Information Service at: www.westsussex.gov.uk/fis.

All childcare settings, including holiday playschemes and breakfast clubs should have a special needs policy and a Local Offer document, as well as a member of staff who is the Special Educational Needs Coordinator (SENCO). Ask about this when choosing a place for your child.

Specialist preschools

If your child has complex needs that mean they would struggle in an ordinary preschool, you may find that a more specialist early years setting would suit their needs.

Chailey Heritage School, near Lewes, works with children from the age of two who have complex physical disabilities, communication difficulties and high health needs. However, in order for a child to be considered for a place at the school, the local authority (LA) has to request it, so seek advice as early as possible.

Ingfield Manor School in Billingshurst offers full or part-time places in its early years provision, which is for children aged 3-6 years with neurological motor impairments, such as cerebral palsy, and associated learning problems. Here, children learn to develop movement skills, speech and communication, cognitive, self-help and social skills through the Early Years Foundation Stage Curriculum embedded within a Conductive Education framework within small groups and a high staff to pupil ratio. Teaching and therapy is provided by Ingfield’s multidisciplinary team. The local authority would have to agree to support and fund a place.

Preparing your child for the move from preschool to school

Children who have additional needs may need more support than their peers to help their transition from preschool to school. It is helpful if the family and professionals involved with the child have a meeting beforehand to discuss and plan for the needs of the child to ensure their transition goes as smoothly as possible. To find out more, go to www.westsussex.gov.uk and search for ‘supported transition.’ You can also find general information for all parents about preparing your child for school on the council’s website by searching for ‘moving from preschool to primary school’.

How can I tell if a school is right for my child?

‘How can you tell if the school is right? You just have to go and see, don’t you, and you know what your child is like. Can you picture them being there? It’s just the same as ordinary children.’

Parents say that it can feel like there is very little choice if your child has SEND, particularly if their needs can only be met in a special school or unit. Whatever the school, perhaps the key question to ask is: ‘can this school meet my child’s additional needs?’ With mainstream schools this can be hard to assess.

All mainstream schools are expected to be inclusive but, inevitably, some have more experience or enthusiasm than others. As previously mentioned, schools are covered by the Equalities Act 2010, so it is useful to know that the duty not to discriminate also applies to prospective pupils and the admissions process. When you visit a mainstream school:

- Talk to the head and try to get an idea of the school’s attitude towards children with SEND, and more specifically to your child’s specific needs. Have they had a child with similar needs before? Look at the school’s SEN Information Report and their Local Offer.

- Meet the school’s Special Needs Coordinator (SENCO). Find out how much time they have away from teaching to devote to this role.

- You may wish to find out how many children with SEND are on the roll. If a school has a significant number of children, they are more likely to be experienced. However, if the SENCO’s role is part-time, will he or she be spread too thinly if there are many students?

- Try to find out what resources the school has for children with special needs, such as extra classroom helpers, learning support assistants and visiting specialists. The local authority gives schools extra money to support children with SEN, so ask the school about the extra support they offer.

‘Nursery was such a struggle, so we knew a mainstream classroom wouldn’t work for our son. When we walked into the unit, it was a gut feeling, but we knew we’d found the right place.’

What should you expect from the school?

Your child’s school MUST:

- Provide the name of the teacher responsible for children with special educational needs, usually called the Special Educational Needs Coordinator (SENCO).

- Explain the way it decides which children need help and how it will be given, in line with the SEND Code of Practice 2015.

- Describe how it will work closely with parents.

- Publish a SEN Information Report annually to parents on its implementation.

- Publish a Disability Equality Scheme and information about access to the school for disabled children and a plan for how it will improve this access over time.

- Make reasonable adjustments to avoid putting disabled children at a disadvantage.

Bullying

Children with SEND are more at risk of bullying. Sometimes, they may be more likely to bully others, too. Bullying is very distressing for children and parents, but there are things you can do to support your child if you think they are being bullied. The first step is to talk to your child and read the school’s anti-bullying policy.

A number of national organisations have resources for families on bullying, including: the Anti-Bullying Alliance (www.anti-bullyingalliance.org.uk); Contact, (https://contact.org.uk); and Mencap, (www.mencap.org.uk); the National Autistic Society (www.autism.org.uk).

Exclusion

It has been shown that children with SEND are at increased risk of being excluded at some point in their school life. Exclusions can be fixed term for a specific number of days, or permanent. The school must write to tell you that your child has been excluded, why, and for how long. There should also be a reintegration strategy in place before your child returns to school.

Sometimes, it’s only when your child faces exclusion that you realise they have special needs and these are not being met at school. Schools are meant to take all possible steps to avoid the exclusion of children with special educational needs. This could include reassessing their needs, or requesting an EHC Needs Assessment. If your child is excluded, even for a very short period, it is a very worrying time for parent and child. There are options for appeal, but you will need to seek advice and we would suggest that you speak to one of the organisations listed in these options here.

Some parents of children with special needs also find that schools ask them to collect their child early, or send them home whenever there is a problem. Sometimes, they suggest the child only comes to school part-time. Although the school does not call this a formal exclusion, in practice it is excluding the child and this is what is known as an ‘informal exclusion’. This may be a sign your child is not getting the support they need and is also unlawful, so if you do find yourself in this situation, take action as soon as you can.

You may wish to speak to some of the organisations listed earlier in the chapter for advice on how to tackle this, but in the first instance you should speak to the school and indicate that your child’s needs are not being met. You should also ask what support they plan to put into place to rectify the situation so your child can access education.

Further education (16 to 19 years)

Further education (FE) is learning mostly for young people between the ages of 16 and 19. It includes school sixth forms, sixth form colleges and further education (FE) colleges. Some FE is open to older people who wish to catch up on their education, or do vocational and access courses.

Higher education is provided by universities and similar institutions that offer degrees and Higher National Diplomas (HNDs).

Further education is often the first option for our young people when they leave school. Initially, the range of choices can feel overwhelming, but many of us found we quickly narrowed it down to just a few possibilities.

This section will examine those options in more detail, tell you about the kinds of additional support available in further and higher education and give you advice on how you and your child can make the best choices for their future.

It is important to remember that when your child reaches 16 years of age, their views, wishes and aspirations are recognised in law as the priority.

If they need help to think through their options, they can get advice from West Sussex SENDIAS.

What options are there?

All young people are entitled to free full-time education until they are 19. A change to education law, called ‘Raising the Participation Age’, means that all children and young people have to stay in some form of education or training until their 18th birthday. There are some exceptions, such as those joining the armed forces, young people who become parents and those who are full-time carers for family members. However, this does not mean that they have to stay on at school when they finish Year 11. Options open to your young person include:

- Staying on at school, if the school has a sixth form.

- Going to a sixth form college.

- Going to a further education (FE) college.

- Going to a special school sixth form such as Manor Green College or Oak Grove College, if they have complex needs.

- Going to an independent special school or college, which could be residential.

- Doing work-based training such as an apprenticeship.

- Combining part-time accredited education and training with work or volunteering that lasts for more than 20 hours per week.

- Some young people may want to leave education behind and look for a job, but remember they’ll now have to combine this with training until they’re 18 years old.

From Year 9 onwards, your child’s annual review should focus on outcomes for preparing for adulthood. You can find out more about outcomes at: www.preparingforadulthood.org.uk.

By the time your child reaches the end of Year 11, their chosen path should be clearly mapped out in their EHC Plan. All young people should be made an offer of learning by the end of September after they complete Year 11.

‘I didn’t know Beth had a right to full-time education until she’s 19. No one explained it to me.’

Getting the right paperwork in place

EHC Plans can continue if needed until at least 19 years of age, and in some cases up to the age of 25.

If your young person doesn’t have an EHC Plan, but feels they need more support than their school or college can offer they will be able to request an EHC Needs Assessment, with a view to getting an EHC Plan. Considering an EHC Plan is a good idea, especially if you feel your young person will continue to need support until they are 25 years old. To find out more go to EHC Needs Assessments. You can also get advice from West Sussex SENDIAS.

If you feel you need further advice on SEND law and education, you can refer to IPSEA’s section for young people aged 16 to 25 years: www.ipsea.org.uk/pages/category/young-people-aged-16-25. As well advising you about SEN Support for over 16s, it also guides you through the EHC process, with model letters, which you can download and adapt as part of your application.

Thinking about post-16 options

Your young person’s Year 9 annual review kick-starts the decision-making process with the first steps in transition planning. The school should provide information on post-16 options at this point, and as your child moves through Year 10 and 11. There are many different courses available, so it is important to choose one that is the right level for your child. Ask your child’s teachers for their input. College websites can also be helpful.

‘I think what I found really hard was there are loads of options out there, but you have to do all the work. You know, you’ve got to find out what they are and then try and get your head around them all.’

16 to 19 Study Programmes

Study programmes are publicly funded programmes of learning for 16 to 19 year olds (or 16 to 25 year olds where the student has an EHC Plan). The programmes are based on a young person’s prior attainment and are designed to help students meet their educational and career goals.

For example, if a young person is academically able, they may study GSCEs or A levels. Other students may prefer to take a different route and study for an apprenticeship or gain other vocational qualifications such as a BTec or HND.

Because providers have flexibility in the design, delivery and content of a study programme, it means that they can create highly personalised programmes for young people with a learning difficulty and/or disability.

Having said this, they still need to meet the Department for Education’s principles, which state that a study programme must:

- Provide progression to a level higher than that of the student’s prior attainment, although for students with a learning difficulty and/or disability this progression may be a broadening, generalising or consolidation of skills.

- Include qualification(s) that are of sufficient size and rigour to stretch the student and are clearly linked to suitable progression opportunities in training, employment or higher levels of education. However, students with a learning difficulty and/or disability can be exempted from this principle altogether if their needs are better met and progression better supported through structured non-qualification based activity.

- Require students who do not have GCSE grade 4 (what was grade C) or above in Maths and English to continue studying these subjects as part of their study programme. Students with a learning difficulty and/or disability need not have their English and Maths learning accredited but do need to have skills in these two areas included in their programme, as relevant to their individual needs and planned progression.

- Allow for meaningful work-experience related to the vocational area of the study programme, which develops employability skills and/or creates potential employment options. For a small number of students with learning difficulties or disabilities where employment is not their aim, even in the longer term, this principle can be disapplied, but study programmes should cover more creative employment opportunities for this group of students.

- Include other activities unrelated to qualifications that develop skills, attitudes and confidence to support the student’s progression.

Course levels and qualifications

This is a brief overview, but you can find out more about course levels and qualifications at the government’s website: www.gov.uk/what-different-qualification-levels-mean.

Entry level awards and certificates from the Open College Network and the Award Scheme Development and Accreditation Network (ASDAN) are courses that focus on independence skills. They are available in a range of subjects that focus on independence skills and are designed for students who want to build their knowledge but may not feel ready to study at GCSE level. Students can progress from Entry level 1 through to Entry level 3 if they wish, with each level having three sub-levels. Entry level 3 can help prepare students to access further courses such as GCSEs, NVQs and BTECs.

GCSEs and A levels cover specific subjects like Maths, English, History or Science. These are sometimes referred to as ‘academic’ qualifications.

Vocational qualifications: NVQs and BTECs are sometimes called known as ‘vocational’ (work) qualifications that teach job skills that are defined by employers. They focus on a particular work area such as engineering, floristry or childcare, for example.

NVQs (National Vocational Qualifications) can be studied by people in employment, or by school and college students who are on a work placement or working part-time. NVQs don’t have to be completed in a set length of time. There are five levels – from Level 1, which covers basic work activities, to Level 5, which is designed for senior managers.

The BTEC is a vocational qualification, often studied by 16 to 19 year olds. The Foundation/Introductory Certificate is equivalent to NVQ Level 1, the BTEC First Diploma is equal to NVQ Level 2 and the BTEC National Diploma is equivalent to NVQ Level 3, or three A levels.

T levels: recently, the government has announced an overhaul of the Further Education system, proposing A levels and a new technical alternative, T levels, as the main further education options after 16, along with apprenticeships. Over the next four years, some BTEC and NVQ courses will be withdrawn and it is anticipated that funding for them will be removed by 2025. Some colleges already have some T level courses on offer to students applying to college for the 2022/23 academic year. We’d advise families to speak to the college directly to find out what types of courses are on offer.

Apprenticeships lead to work-based qualifications. They’re open over 16s who are not in full-time education. Young people doing apprenticeships have a contract of employment, usually for at least 30 hours a week and they work towards a vocational qualification.

Supported internships are another option open to young people aged 16 to 24 who have an EHC Plan. The internship is a structured study programme based primarily with an employer and aims to help young people achieve paid employment through learning in the workplace. Supported internships are unpaid, and last for a minimum of six months. Alongside interning at the organisation, young people complete a personalised study programme, which includes the chance to study for relevant qualifications, if appropriate, as well as continuing with English and Maths.

If your young person is thinking of following vocational or work-related learning at school instead of a traditional GCSE programme, make sure the units and certificates they’ve achieved at school are taken into account for the post-16 course they choose. These students could go on to Entry Level Programme Life Skills or Entry Level Vocational Courses at FE colleges.

If a young person over 18 has missed out parts of their education because of periods of ill health for example and doesn’t have traditional qualifications, they could do an Access Course to get into higher education. Access courses usually last for a year.

Tips to help you

- Find out what level your young person is working at before choosing a course, preferably in writing. Ask the school, or your child’s Educational Psychologist, if they have had a recent assessment.

- Find out the level of the courses on offer and ask if appropriate support will be available for your child.

- Young people who do not achieve English and Maths GCSEs at grade 4 (what was a C) or above by the time they are 16 years old are required to continue to study both subjects after the age of 16 alongside their other course(s).

Choosing a setting

Sixth forms

‘Sixth form’ is effectively Years 12 and 13 (and Year 14, if required). There are two types of sixth form: those that are attached to a secondary school and sixth form colleges.

School sixth forms and sixth form colleges cater for 16 to 19 year olds doing full-time courses. Young people with special needs attending sixth forms will be expected to join mainstream courses, but there’s learning support available to help them do this. Some colleges also have specialist programmes, so it is worth checking. If your child has physical disabilities or sensory impairments, check the access is suitable for them.

‘It’s more of an open environment in sixth form college. You’re left to your own devices more.’ (Lucy, 17)

If your child wants to continue their education in a school’s sixth form, you’ll need to discuss this with the school in advance, but if the courses they want to do are on offer, the transfer should be simple. If they want to move to a sixth form at another school, contact the new school early on, as the school will have its own application procedure in Year 11. Sixth form colleges also have an application process. Your school can tell you about this.

Schools with sixth forms in West Sussex

You will find a list of mainstream schools with sixth forms in our Further Education Directory.

Tips for sixth form

- Check the deadline for applying for sixth forms – your child will get priority if you apply by the right date.

- Sixth forms offer a full range of academic and vocational courses: including ‘A’ levels; BTEC at intermediate and advanced levels; RSA courses; Open College Network options; and the opportunity to take or re-sit GCSEs.

Further Education (FE) colleges

Like sixth forms, Further Education (FE) colleges have a wide range of academic and vocational courses and there is a full application process when your child is in Year 11. FE colleges also offer some higher education courses, too. They tend to have a broader range of vocational courses than sixth forms; these courses equip students for particular types of work including engineering, childcare, catering, hairdressing, IT or game development.

They also offer specific courses for students with special needs. These courses can run alongside mainstream classes for young people who have additional needs, or they can provide a stepping stone to more mainstream opportunities. It’s worth bearing in mind that ‘full-time’ courses at FE colleges usually mean around 16 hours a week, so you will need consider how your young person will fill the rest of their time.

FE colleges in West Sussex

Students can apply to go to any FE college. There will be extra travel costs if they opt for a college further from home, but it may be worth considering if the course is right. You can find a list of West Sussex FE colleges in our Further Education Directory.

Specialist sixth form education

For some young people with more complex educational needs, especially those with profound and multiple learning difficulties (PMLD) or severe learning difficulties (SLD) including autistic spectrum conditions, moving to a mainstream FE college might not be appropriate.

You and your young person may want to consider one of the specialist schools with sixth form provision within West Sussex. There are also a number of independent specialist schools that educate children to 19 years. See our Further Education Directory for more information on both options.

Independent FE colleges

If a young person’s needs can’t be met at a local college or sixth form, a specialist college may be an option. However, funding needs to be agreed with the local authority, the Education and Skills Funding Agency and, in the case of a residential placement, social care.

There’s a range of residential and independent FE colleges across the country and they specialise in post-16 education for young people with special educational needs. There can be waiting lists of up to three years for places, so it’s best to apply early.

Getting a place at an independent FE college isn’t straightforward. Fees are high and you need to prove that the young person’s needs can’t be met in the mainstream FE sector by collecting evidence to show that their needs, as described in their EHC Plan, can’t be met in local state provision. You will also need to show that local colleges have been consulted before a specialist college can be considered.

The views of the young person are also central to the application. It’s beneficial to include their views in the evidence you submit and you must show that they want to go to the college.

Getting funding for an independent specialist college is more complicated if you’re applying for a residential place. Funding guidance is updated every year. If the application is successful, funding will usually pay fees for up to three years (depending on the young person’s progress) and could require joint funding with social care and/or health services.

After 19, the Education and Skills Funding Agency will approach local health and adult social care services to share the cost of the ‘accommodation’ or ‘care’ component of the placement.

If funding is turned down, the local authority will advise on next steps and you can ask for the decision to be reviewed.

Other options

Asphaleia Training runs provision across West Sussex for young people aged 14 to 25 who may find mainstream education a struggle. They provide additional support to enable young people to make a good transition into further education or the workplace. For more information, go to www.asphaleia.co.uk.

Getting the information you need to choose

Prospectuses

Sixth forms and colleges have prospectuses that provide information about courses and facilities. You can ask for a copy of a prospectus by calling their Admissions Office. Many colleges also have them available to look at on their websites. If you don’t have internet access at home, you can access them at one of West Sussex’s FindItOut Centres:

Inspection reports

Sixth forms and colleges are inspected by Ofsted. You can read the reports on the Ofsted website at www.ofsted.gov.uk. They can be quite wordy, but they give useful information on strengths and weaknesses, as well as indicating how establishments support students and measure quality. If your young person needs help making sense of Oftsed reports, contact West Sussex SENDIAS. It has Young People Advisers, who can support them with this, see here for contact details.

School visits

Special schools and mainstream schools usually invite local colleges to visit and explain what they offer. Some pupils will also have done a ‘school link’ programme, where they may go to visit local colleges. If your young person wants to access a link course from Year 10, the school would need to arrange this directly with the college

Taster days

Local sixth forms and colleges offer taster days, open days and open evenings each year. Check their websites for details.

Other information

The National Careers Service website has information and advice about education, training and work: https://nationalcareersservice.direct.gov.uk. Or you can speak to a qualified adviser by contacting their helpline: 0800 100 900. You can also speak to an advisor via their webchat service.

Independent FE Colleges

The NATSPEC website: www.natspec.org.uk is packed with information about specialist further education and includes a search function so you can look for colleges, as well as useful information about applying for courses.

Questions to ask to help you consider options:

- What are my child’s needs, what do they like doing?

- What courses are available and will they meet my child’s needs?

- Will my child need to study Maths and English in addition to the main course?

- What are the advantages and disadvantages of staying on at a school sixth form or opting for a sixth form college?

- What do local further education colleges offer?

- What are apprenticeships and traineeships and how do they work?

- How many hours a week is the course we are looking at?

- What will my child’s choice offer them?

- What course (or job) could they do after this?

- What support is available to help with the transition from school to the new setting?

- What additional support arrangements are provided?

- When would my child get their detailed support plan and when could they meet support staff?

- When should we apply for the course?

- What reasonable adjustments are needed to help my child with the application process, including the interview?

- Will my child need transport to and from the college and who will arrange it?

- Will my child be eligible for financial help to go to college and how can I apply for it?

- If local choices aren’t appropriate and my child wants to consider an independent residential college, who will pay the fees and how do I find out more?

- What happens after they finish the course?

Tips to help you

- Discuss education or apprenticeship and traineeship options with your child’s careers adviser.

- Find out what level your child is working at so you’re sure you are asking about a place on a course pitched at the right level.

- At sixth form, or sixth form college, students may not be timetabled to attend lessons for a full day five days a week and class sizes vary. Check what support is available when lessons aren’t running.

- Also bear in mind that in a further education college ‘full-time’ education is usually around 16 hours per week.

- If your child is not able to study or look after themselves independently in the free hours how will you manage?

- Have a look at the colleges and ask about the extra and specialist support they can provide – it can vary between establishments.

- Often, prospectuses don’t mention provision for students with emotional or behavioural difficulties. If it is relevant to your young person, ask whether and how the colleges cater for this type of need.

- If you think what is offered locally is unsuitable, consider looking at colleges further afield.

- Identify who can help at each college and get their contact details.

- Don’t assume your young person’s school reports and EHC Plan will automatically be forwarded to a college. Make copies yourself and send paperwork directly to the Learning Support Coordinator or Inclusion Manager to ensure they receive them prior to your visit.

- Take more copies of your child’s paperwork with you when you visit, along with other relevant information to support your discussion with the Learning Support Coordinator or Inclusion Manager at the sixth form or FE college.

- Ask what previous students went on to do next.

- Arrange to look around the college when the students are in lessons.

‘One of the reasons I picked [the college] is that I don’t have to go up any stairs.’ (Andrea, 17)

Applying to sixth forms and colleges

Your child’s school may manage the application process if you’re applying to a college in West Sussex. Check with them.

If the school isn’t managing the process, make sure you get a prospectus for the institution you’re interested in. It usually has an application form at the back that you fill in and send off. If your child hasn’t heard back from the sixth form or college within a month of sending the application form, offering an interview date, follow this up with the college admissions department.

Interviews and offers

Some sixth forms or colleges offer an initial interview that includes guidance for choosing the appropriate course, especially if the student is unsure or has unrealistic expectations before the course interview.

At the interview, the college fills in a report that is signed by the student and the interviewer. The report recommends a place on a particular course and the young person may be verbally offered a definite or provisional place at that point (depending on their exam results). A registration fee may be charged.

Preparing for the interview

Many parents worry about whether it is acceptable for them to go with their young person to the interview. Colleges often expect young people to discuss the details and arrangements directly with them. You could ask your child and be guided by what they want – if they feel they want you there to support them, that is fine.

Contact the Admissions department in advance to discuss the reasonable adjustments they may need to make for your child’s interview. There may be a group interview, a written task or another activity that is unsuited to your child, so you may need to discuss how the process can be made accessible to them.

‘We hadn’t prepared Beth for this because we had got used to it being second nature to interpret for her, or to think on her behalf. Suddenly this person was talking to her and she was just blank. We knew she was nervous and although she’d written out a list of questions to ask, it was just as well we went because he didn’t ask her if she had any questions so she just didn’t ask any.’

Questions to ask (before or at the interview)

- Do tutors have experience or training in the young person’s special need?

- Will there be support for your child in class and at what level?

- Will learning support be in place from day one and how long will it be offered for?

- Will the same support staff be with the young person for the whole course?

- What size are the classes?

- What does the course involve, for example are there theory classes, essays or group discussions?

- What’s the timetable like for each day?

- How many hours of independent study is expected each week? Is there any support available for this, such as a teaching assistant available to all students working in the library?

- What happens between classes? Is there any supervision?

- Where do students take their breaks?

- How are work placements arranged?

- Is transport to college or to work placements arranged? If it is, how and when do we need to apply?

- Is there support if the young person is struggling emotionally?

- Will speech and language therapy support be available?

- What days of the week and times will the programme run? (full-time courses don’t always run every day).

- Will the course definitely run even if only a few enrol?

- What other options are available if the course does not run?

After the interview

A copy of the report that was filled in at the interview will be sent to your young person formally offering a place on the course. An offer of a place may be made subject to getting certain GCSE results, but unconditional offers can be made for Foundation Level courses. Your young person will be asked to complete an acceptance form and return it within two weeks.

The colleges arrange introductory days for students to meet tutors and other students. It’s a good idea to attend.

Support in further education

It’s helpful to know about the extra assistance offered to students when thinking about college options. Sixth forms and colleges cater for young people with special needs, but the way they do it varies.

Colleges and sixth forms need to take into account the Equality Act 2010, which says they must make ‘reasonable adjustments’ so disabled students are not treated less favourably and not discriminated against. All colleges and sixth forms have a Single Equality Scheme, which you can usually find on their website. Ask them how they put this into practice for young people with special educational needs and disabilities.

‘The woman said they would get the tutors to only require him to do the minimum so that he didn’t fail and lose his confidence. They said if he needs extra learning support, they will try to provide it as he has missed seven years’ schooling due to his ME. They were really accommodating.’

What kind of additional support is available?

An EHC Plan will detail specific provision for your young person, but learning support is also available for young people who do not have an EHC Plan. They will be part of what is known as the ‘SEN Support’ group. Post-16 educational providers receive additional funding for these young people, so a wide range of support should be available from Learning Support departments. Types of support could include:

- Use of specialist software and equipment.

- Reasonable adjustments to teaching and learning and to physical access.

- Help with literacy or numeracy for individuals or in small groups.

- Sessions with mental health workers for learners with mental health difficulties.

- Support for learners with dyslexia or dyspraxia.

- Additional specialist teaching, for example for students with dyslexia, dyspraxia or discalculia.

- Provision for specialist services.

‘I said, “What level of support would you give, these are her difficulties,” and they said, “Oh, well you apply to the college and then we’ll tell you.” I said, “No, I want to know what sort of support you will give before I apply.” So I had to make another appointment to see a learning support person. We had a whole hour with them and it went quite well.’

It is a good idea to ask the education provider what sort of additional support might be available, as it may vary from one setting to another.

Most colleges have student support teams, who offer information and help on things like financial assistance, welfare services, accommodation, careers advice, health issues, study problems and personal difficulties. Colleges also have counselling services, which can help young people with personal matters.

What is not available?

It is unlikely services like educational psychology, speech and language therapy or physiotherapy will be made available at mainstream further education colleges, unless it has been included in an EHC Plan.

Specialist colleges may offer some or all of these services, but you should talk to someone from the college’s Learning Support Team to discuss your child’s needs and find out what support the college can offer them.

Tips to help you get the right support

- If your child’s staying on at a school sixth form talk to the SENCO to see what support he or she will get.

- Don’t assume appropriate support will automatically be in place for the young person. Make contact with the Learning Support Team at the college or sixth form and arrange a meeting to discuss how the needs of the young person can be met.

- Ask for confirmation of the level of learning support available to be sent to you in writing before the start of the course.

- Ask whether the college or sixth form has access to specialist support and if not, whether they will buy it in.

‘A tutor seems to have time to help him and he is very understanding. He said, “If he wants to put something on tape instead of writing I’ll let him do that.” It makes all the difference.’

We can’t stress enough the importance of doing your own research. Professionals will tell you about special courses offered at different colleges, but it’s unlikely they’ll pass judgement about the quality of them. Find out as much as you can about the courses your child is interested in and the support available to them, that way they are more likely to work out well.

‘I think the most useful thing was actually speaking to other parents who have already gone further down the line.’

What if things go wrong?

Even with all the preparation in the world, things can still go wrong. You will have less contact with sixth form or college than you are used to having while your young person was at school, so it may be harder to spot issues.

If there are problems, talk to staff at the sixth form or college. They may be able to find a solution. Contact Learning Support as well as your child’s tutor.

If your son or daughter is struggling with their course, you may be able to find other courses they can transfer to quite quickly, but it’s not always so simple.

If the worst happens and your child leaves the college, they don’t lose their right to further education and training up to the age of 19 – if they have an EHC Plan, it can be free up to the age of 25, provided there is an educational objective or outcome.

Financial help with 16-19 education

All young people between 16 and 19 years have the right to a free full-time or part-time education, provided they satisfy national residence conditions, but additional financial help is available to some students.

Bursary fund

The 16 to 19 Bursary Fund provides financial support to help students overcome specific barriers so they can remain in education. There are two types of bursary.

The Vulnerable Student Bursary is available to defined vulnerable groups of students. These are: students who are in care; care-leavers; students who receive Income Support or Universal Credit because they are financially supporting themselves and someone who is dependent on them and living with them, such as a child or partner; and students who receive Universal Credit or Personal Independence Payment (PIP) in their own right. Education institutions must confirm that a young person meets one of the above criteria.

There are also limited discretionary bursaries, which can be used to support students facing genuine financial barriers like costs of transport, food or equipment. Sixth forms and colleges decide how much is paid and how often. Speak to Student Support services or a tutor to find out whether your child is eligible.

There are also two schemes offering residential support. The Residential Bursary Fund provides financial help for students attending an institution delivering specialist provision while the Residential Support Scheme provides financial help to students who need to live away from home to study because the same (or similar) substantial Level 2 or Level 3 qualification is not available within daily travelling distance.

For more information on all of the above funding options, go to:

www.gov.uk/guidance/16-to-19-education-financial-support-for-students.

Other financial help

There may be other funds available to help with the cost of fees, equipment, childcare or travel. Students don’t have to be on benefits to get financial help – but funds are limited and do run out, so you should apply as early as possible.

You’ll need to fill in forms and provide evidence and financial details, so make sure you read through the institution’s guidelines on financial assistance before making an application.

What happens after 18/19?

In the last year of formal education, decisions about your child’s future learning or working life need to be made. The school or college programme includes links with local options for education, care or supported employment.

Young people don’t have an automatic right to stay on in education after they turn 19, but there are options and, in some cases, they may be able to stay in education until they’re 25. You’ll need to get individual advice, so ask your child’s school or college for help with this. For some young people this may be the point at which to consider a specialist further education college, see here for more information. Young people who have done A levels or equivalent qualifications may want to move onto higher education.

After college I’ll be looking for a FE college like Plumpton. I would like him to stay in education until the last day, as long as possible.’

Higher education

Going to university or a college that offers higher education (including FE colleges and specialist institutions like art colleges) gives young people over the age of 18 the chance to acquire more academic qualifications.

Further education colleges often provide some higher education options – Higher National Diplomas (HNDs), higher level NVQs and degrees in partnership with universities, for example.

For part-time courses, you apply direct to the college, for full-time courses, the application process is through the University and College Admission Service (UCAS). Disabled Students’ Allowances (DSAs) can offer financial support – see here.

Just as it was for choosing post-16 options, research is really important in making the right choice for your young person. Don’t encourage your child to apply for a place until they’ve visited the university and considered the course carefully, as changing courses later can affect funding.

The range of degree and higher national diploma or equivalent courses on offer is detailed in university prospectuses. You can also find lots of useful information on the UCAS website at: www.ucas.com.

Additional support in higher education (HE)

Under the Equality Act 2010, it’s unlawful for universities and colleges to discriminate against disabled students. They have a legal requirement to make ‘reasonable adjustments’ so that disabled students are not put at a substantial disadvantage.

All higher education institutions should have a Disability Equality Scheme that sets out how they intend to improve disability equality across their organisation.

Telling the institution about your child’s disability in advance is advisable, particularly as EHC Plans lapse once young people begin university, so you must be proactive in talking to the setting to ensure that they understand your young person’s needs and can arrange for support to be put in place before their course starts.

For advice, you could call Disability Rights UK’s dedicated Disabled Students Helpline: 0330 995 0414 or email students@disabilityrightsuk.org. They also have online information and fact sheets to download at: www.disabilityrightsuk.org.

Most universities and colleges have disability coordinators or adviser. Contact the Disability Coordinator or Learning Support Coordinator for the university to discuss access and support arrangements and to set up a visit. Visiting the university and speaking to the staff about your young person’s needs enables you to discuss any adaptations he or she may need and to talk to academic staff about specific course information.

It’s worth taking a list of questions to ask members of staff and students, as well as your young person’s EHC Plan, if they have one. What you want to ask will depend on your child’s disability or additional needs, but these are some examples:

- Are all the buildings physically accessible?

- Are there any particular facilities for disabled students?

- Are there any current students with a similar disability? If so, what type of support do they receive?

- Who will help organise support?

- Is there help to apply for additional funding if needed?

- Are methods of teaching and assessment appropriate?

- What would happen if there’s a problem after starting the course?

- Is there specialist university accommodation available, for example rooms on a quiet corridor, or with accessible, private bathrooms?

Student Unions and other help

Every university and most colleges have a Students’ Union (SU) that’s affiliated to the National Union of Students (NUS). They also have welfare services and can be a useful source of information and support when you are considering applying to a university, or when you have been offered a place there. The Students’ Union office contact details should be included in the information you get on the institutions your child is interested in. Most universities will also have other support services for students, such as a student counselling service.

Tips

- Ask if there are any students at the place you are interested in who have similar needs to your young person. If so, try to speak to them if you can as this can help the young person assess whether the course and environment is right for them.

- It can be useful for you to talk to the student’s parents to get practical information and tips so you can help your young person to enjoy their new independence by ensuring they settle in well.

Funding for higher education

Going to university or college is a big investment, but students don’t need to pay any tuition fees up front. Instead, the fees are covered by a Tuition Fee Loan. The highest amount an English university can charge for annual tuition fees is currently £9,250. Student Finance England also provides Maintenance Loans, which can help living costs like rent, food, books, transport and entertainment.

The easiest way to apply for student finance support is online at www.gov.uk/student-finance, or you can call their helpline: 0300 100 0607 (text relay: 18001 then 0300 100 0607). The website has a section for parents about higher education that should answer some of your questions. Your child shouldn’t wait until they have a confirmed place; they need to apply as soon as they accept an offer.

If your child has a disability or specific learning disability, it’s a good idea for them to contact universities and colleges to discuss their requirements before sending their application to UCAS.

Disabled Students’ Allowance (DSA)

Disabled Students’ Allowance (DSA) is a grant to help meet the extra costs students can face as a direct result of a disability, ongoing health condition, mental health condition or specific learning difficulty. It helps disabled people study on an equal basis with other students.

DSA is paid on top of the standard student finance package and it doesn’t have to be paid back. The amount your child may get depends on the type of extra help they need, not on your household income. DSA can be used for:

- Specialist equipment needed for study such as computer software, for example.

- Non-medical helpers, like a note-taker (scribe) or reader.

- Extra travel costs because of your child’s disability (see here for more about help with travel costs).

- Other costs, such as Braille papers for example.

It’s best to apply for DSA as early as possible, don’t wait until your child has a confirmed place at university as only limited support may be available from the university until the DSA has been organised. Visit www.gov.uk/disabled-students-allowances-dsas.

If your young person wants to be considered for DSA, complete a DSA1 form. Your young person will need to provide up to date evidence of their disability or condition (for example, a letter from a doctor or specialist or a ‘diagnostic assessment’ from a psychologist or specialist teacher). If they last had an assessment when they were under 16, it will need updating. You’ll have to pay for any tests to establish whether your child qualifies for DSA. If you can’t afford to pay, you may be able to get financial help through the institution’s Access to Learning Fund.

If your child qualifies for DSA, Student Finance England will advise whether your child has to attend an assessment centre to work out what help they will need. The centre will write a report outlining what is needed and will send it to Student Finance England. The centre should also send a copy to your child.

Section two: Finding your way

Health and medical matters

When your child is diagnosed with a condition, it is likely that you will find that you have to juggle many appointments with different heath services and professionals. Sometimes managing them and the paperwork can feel like a full-time job in itself, particularly as specialists tend to concentrate on just one area of your child’s condition. For example, speech therapists focus on communication and/or eating; physiotherapists on movement; so you will find that you may see a range of people in different departments, or even different centres.

However, while they are the medical experts, it is important to remember that as the parent you are also an expert on your child. You spend every day with him or her, you know what treatments are being given and you know how they affect your child. You are probably the one constant figure in your child’s care, and you understand him or her better than anyone else. With this unique knowledge, you should expect to be treated by professionals as a respected and valued partner in all aspects of your child’s care.

‘Every child with Down syndrome is going to be different from every other, every autistic child is different from every other. How does a professional know exactly where your child’s strengths and weaknesses are, or what exactly their comprehension level is? Tell them.’

Keeping track

You may find it useful to use your child’s Personal Child Health Record or red book to make notes about key episodes in your child’s health. You can get extra pages for your child from your health visitor. During your child’s early years, contacts with health professionals, both in hospital and in the community, should also be recorded in the red book and it helps if you take it to appointments so that you have a full record of who is involved with your child.

Understanding the NHS

Having a child with SEND can mean that you need to access a number of different health services, which may be in different locations within the county or further afield if your child needs specialised care.

In 2012, the way that health and social care services are delivered locally and nationally changed when the Health and Social Care Act 2012 was brought in. What this means is that at a local level, the council has a stronger role in shaping services and has taken over responsibility for local health improvement.

Decisions on the best way to improve local health and well-being are made by a group called the ‘Health and Well-being Board’, which is made up of elected representatives, as well as people from NHS Clinical Commissioning Groups (CCGs), local councils, voluntary organisations and Healthwatch. The way the money for health is spent is decided by Clinical Commissioning Groups, which give GPs and other health workers responsibility for making those decisions. And the Care Quality Commission (CQC) has to make sure that services meet safety and quality requirements.

In West Sussex, hospital or ‘acute’ services are provided by a number of different trusts. You can find out which trust runs your child’s hospital by going to: www.nhs.uk and searching under ‘services near you’. This will bring up information about the hospital, including the address, plus contact information for the relevant trust. It is worth remembering that under patient choice rules patients can choose which hospital they are referred to.

Sussex Partnership NHS Trust provides mental health, learning disability and substance misuse services for adults of all ages. Sussex Community NHS Trust provides a range of community health services including child development centres, community nurses; continence services; rehabilitation, wheelchair and equipment services; and speech and language therapy.

Who’s who in health?

At the start of your journey, you may feel confused by the abbreviations and unfamiliar jargon people use to describe services that your child may need to access, such as SALT (Speech and Language Therapy) and OT (Occupational Therapy), for example. If you’re not familiar with the jargon being used, don’t be afraid to ask for an explanation, but this list of ‘who’s who’ in health should help you to navigate the services on offer. Although long, it is not an exhaustive list. However, it will allow you to familiarise yourself with the names and roles of some of the services that are commonly involved with treating children.

Audiologist or Clinical Scientist (Audiology): clinicians who provide assessment, diagnosis and rehabilitation of hearing and balance problems. This includes interventions such as hearing aids, which can reduce barriers to communication created by hearing loss.

Child and Adolescent Mental Health Service (CAMHS): a multidisciplinary team of psychiatrists, therapists and others who specialise in helping children with mental health issues. You can be referred by your GP or other professionals.

Children’s and Young People’s Continence Team: a nurse-led team who provide a tier 2 targeted specialist continence service to children and young people. Supports families whose children have ongoing difficulties with bladder or bowel control, constipation, withholding and other toileting issues.

Children’s Community Nursing Team: provides out of hospital care for children who are ill or require nursing to enable them to stay at home, school or in another community setting. This includes: babies, children and young people who have a long term health condition; complex health needs and disability, including requiring continuing care; a life-limiting or life-threatening illness, including palliative and end of life care. The team provides practical advice and support to families and carers.

Clinical Child Psychologists: diagnose, assess and treat emotional and behavioural difficulties and may offer counselling for families in difficulty.

Community Dentists: sometimes children with disabilities or other conditions, such as extreme anxiety, are referred to a community dental clinic where the dentists have additional skills in treating them. They may also make home visits when appropriate.

Community Mental Health Workers: community-based service to help children with emotional or mental health issues. Can work with children and families at home or in school. Any service that knows you and your child can refer you. Community Mental Health Workers will refer on to CAMHS if they think this is more appropriate.

Community Paediatrician/Community Child Health Doctors: work at Child Development Centres (CDCs), in child health clinics or in schools. They may also make home visits.

Community Services Pharmacists: have a responsibility for ensuring that pharmacy services are provided to community healthcare units. They play an important role in liaising between various agencies that provide care.

Consultant: senior doctors who have specialist qualifications in a particular area of medicine or surgery.

Consultant Community Paediatricians: have a special interest in developmental and learning difficulties and co-ordinate care of the children who have them.

Consultant in Rehabilitation Medicine: specialist doctors who often lead a multi-disciplinary team to help people with complex disabilities. They work on treating and preventing symptoms and complications, and also have specialist expertise in areas such as wheelchairs and orthotics and assistive technologies.

Dietician: healthcare professionals who advise and work with people with special dietary needs in order to promote well-being and prevent nutrition-related problems.

General Practitioners (GPs): family doctors.

Health Visitors: mainly work with children under five. They may keep in touch with parents of older children with SEND, but you may have to ask. They offer development reviews on children at various stages and can be the first to spot a problem that needs referring to a specialist. They often know about local services, support groups and benefits. They can support applications for respite care, re-housing, adaptations to your home, and so on. See also Paediatric Liaison and Specialist Health Visitors.

Occupational Therapists (OTs): help children to develop everyday skills such as feeding themselves, getting dressed, classroom-related tasks and playing. They will assess and/or treat children at an appropriate setting in the community such as your home, educational setting, or local Child Development Centre, offering advice and/or treatment as well as recommending special equipment.

Ophthalmologist: doctor who specialises in the medical and surgical management of conditions of the eye.

Opticians: if there are reasons why it’s difficult to take your child to the opticians, you can ask any optician for a home visit. Glasses for children are no longer free, but there is a voucher scheme to help toward the cost. Ask the optician for details.

Optometrist: healthcare professional who performs eye tests and prescribes corrective lenses or glasses to those who need them.

Orthoptist: investigate, diagnose and treat difficulties with binocular vision and problems with eye movement. This includes double vision, reduced vision and eye misalignments (squints).

Orthotist: qualified to design and fit ‘orthosis’ – surgical appliances like braces, callipers, footwear, and so on. Orthotics deals with the support and bracing of weak joints or muscles.

Paediatricians: doctors who have specialist qualifications in all aspects of children’s health and development.

Physiotherapists: work with children and their families to help develop children’s movement skills, function and mobility. They do this by offering advice and activities to help encourage important skills such as rolling, sitting, crawling and walking, as well as encouraging active play to help develop strength and balance.

Psychiatrists: doctors with specialist qualifications in diagnosing and treating people with mental health problems. Child Psychiatrists work with children and young people.

School Nurses: are based in mainstream schools and liaise with nurses in special schools. They undertake health assessments and offer advice and support on a number of health-related issues to parents, carers and teaching staff. When necessary, with parental consent, they can refer children to other NHS or partner services.

Specialist Health Visitors: the specialist heath visiting service is for children with additional and complex needs and their families. They ensure that correct support is given to the child by sign-posting and sometimes handling referrals to other services. They can also help with sleep and behavioural issues. The service normally covers children aged from birth to eight years, however exceptions can be made for children over this age. It can be accessed in many ways; via early years’ settings (such as preschools and schools), GPs, Child Development Centres, or parents can self-refer direct to their local heath visiting team.

Speech and Language Therapists (SALT): diagnose and treat problems with understanding, communicating and speaking. They can also help with swallowing and eating difficulties. Speech and Language Therapists can play an important role in providing assessment, intervention, support and training.

Referrals

Your GP or health visitor is usually the person to ask if you think your child would benefit from seeing a specialist health professional. Occasionally, you may be referred by another professional, such as a social worker or educational psychologist. Some of the specialists listed above also accept self-referrals, or may at least provide advice over the telephone. If you have to wait a long time for an appointment and things get worse, go back to your GP and ask them to try to bring your appointment forward.

Your doctor (GP)

Even if most of your child’s treatment is at a clinic, it’s important to have a good relationship with your GP, as your child will inevitably have common childhood illnesses, which will usually be dealt with at the practice.

Most GPs will only have a few patients with SEND on their list. If your child has a very rare condition, it may be the first time the GP has seen someone with it. A good GP will appreciate all the information that you can give, and the knowledge you have acquired about your child and their needs. Your GP can also be an ally if you’re trying to bring forward a hospital appointment or find respite care, so it is worth asking for their help.

As children get older, many will want to have a say in their care. Start practising when they are young and try to build a good relationship between your GP and child. Encourage your child to take part in appointments as much as possible, using their preferred method of communication.

Supporting your child in appointments will help him or her to develop the skills and confidence needed to play as active a role as possible in their adult healthcare choices. This may sound unnecessary, but when your child hits their mid-teens, he or she may want to see the GP independently. Once they are 18, as long as it is felt that they understand (also known as ‘having capacity’) you will have to take a step back, if this is what they want. So recognising this as a future possibility and giving your child the skills he or she will need is vital.

Continuing care

After diagnosis, children and young people remain under the care of paediatricians, who usually continue to see a child until they are 19 years old.

Many children are seen regularly by their local Child Development Centre, their local hospital, paediatricians, Chailey Heritage, special schools, local clinics or specialist centres further afield, such as in London hospitals.

Child Development Centres hold regular, specialised clinics and groups for young children with developmental difficulties. These are run by various health professionals offering ongoing assessment, support and therapy.

Chailey Heritage continues to offer a wide-ranging and highly specialised service for children up to the age of 19 who have complex needs.

Children with ongoing eye or ear problems might go for their regular checks to their local hospital’s Ear, Nose and Throat (ENT) department, or to the Royal Alexandra Hospital in Brighton for more detailed assessment.

Children with chronic asthma receive their care locally by consultants with a special interest in asthma and by tertiary consultants in London or Southampton. You will probably be given appointments to see the paediatrician or specialist at regular intervals, and they should write to your child’s GP each time to keep them informed about progress and treatment.

Children aged four years or over may benefit from the Continence Service, which helps with the management of bowel and bladder conditions.

Children requiring significant support with their emotional or behavioural needs will be seen by the Child and Adolescent Mental Health Services (CAMHS), which has teams in Chichester, East Grinstead, Haywards Heath, Horsham, and Worthing. There is a waiting list, but urgent cases do take priority. CAMHS may see existing patients until they’re 19 years of age.

Children in need of psychiatric inpatient facilities go to Chalk Hill in Haywards Heath for this type of care.

Education Health Care Plans (EHC Plans)

For information on EHC Plans, go to the Education chapter.

Rehabilitation services

The Sussex Rehabilitation Centre is situated at Brighton Hospital and can provide artificial limbs and wheelchairs. More complex problems are referred on to the Rehabilitation Engineering Unit at Chailey Clinical Services.

There is also a special unit, Chailey Rehabilitation Service, for children with acquired brain injuries. They may go there straight from acute care at a hospital, and each child has a completely individualised programme.

Managing medical appointments

‘After our first appointment my head was spinning. I couldn’t remember a lot of what was said. So I got a notebook. Now, a few days before each appointment I start a list of things I want to talk about, then I add stuff as I think of it. In the appointment I make brief notes and fill in the details when I get home. I also use it if I speak to anyone on the phone. It’s incredibly useful to have a record of what was said, who I talked to and when.’

Assessments, appointments, consultations, or visits by health professionals can feel stressful, worrying and tiring, particularly if you are given upsetting news. Once you are in an appointment, it can be difficult to remember everything you wanted to ask, particularly if you are trying to keep an eye on your child, too. Sometimes it is only once you have left that you realise you have forgotten to ask something really important.

The coping question

Sometimes parents may say things are fine and they’re coping, even when it’s not true. But you and your child face your challenges 24 hours a day, seven days a week. You know what the problems are and what some of the solutions may be. Tell the professional what your concerns and needs are so they can try to help you.

How to be prepared

Taking a few minutes to prepare for each appointment can be useful to help you gather your thoughts and ensure you have remembered everything you want to cover. It can be helpful to make a list of what you want to discuss and questions to ask.

In the meeting note down the responses. It may take longer, but when you get home you’re more likely to have the information you need.

Tips for appointments

- Think ahead about the information you need from a consultation.

- Make a list of questions and take this with you. Make sure you have a pen so that you can take notes in the meeting!

- If your child finds new places challenging, it may help if you can prepare them before you go. Try to find an information leaflet or web page with photos of the place where the appointment will be held so they can see where they are going and the equipment they might see there.

Hospital treatment

Going to A&E

There are Accident and Emergency (A&E) departments at: Royal Sussex County Hospital in Brighton; St Richard’s Hospital in Chichester; the Princess Royal Hospital in Haywards Heath; East Surrey Hospital in Redhill; and Worthing Hospital.

You can’t assume that A&E will always have qualified paediatric nurses on duty and, if you are in another part of the country, your child’s medical records will not be readily available. In this type of situation, parents have a vital role to play in helping staff to treat their child.

‘I think you can help the Health Service to be more useful to you. We were up at the A&E department three weeks running one time, and I always find if you’re in a place like that where you might have to wait a long time, it’s no use just sitting there waiting and hoping your child won’t have a massive tantrum. You’ve got to be upfront and you’ve got to tell them exactly why your child’s got to be seen next. They were always absolutely brilliant and got her in there really fast.

In-patient treatment

In our area, most children who need hospital treatment go to Chichester, Redhill, Worthing Hospital or the Royal Alexandra Hospital in Brighton.

Sometimes, children are sent to specialist centres where they may spend some time before returning to their local hospital for ongoing care. London hospitals they may be referred to include: St George’s Hospital; the Evelina (part of St Thomas’ Hospital); or Great Ormond Street. Alternatively they may be sent to Southampton.

Children who are treated locally may have been seen by specialists at your local Child Development Centre. Staff from each centre have plenty of contact with each other, and many of the nurses have years of experience of the conditions treated at your CDC. However, everything you can do to share your knowledge and help communication will make things easier for your child.

‘You have to be very specific and say, “Look, she really is like this,” and, “No, she can’t do this,” and, “If you’re calm, she’ll be calm,” or whatever. Be upfront so that they know the problems – spell it out!’

Preparing for a hospital stay

- Many hospitals have information or materials, such as websites or books to help prepare your child.

- Hospitals may also have specialist staff who are trained to help children and young people to prepare.

- Ask about staying with your child in hospital. Children have the right to have their parents with them in hospital.

- To help you share important information about your child with hospital staff so they can understand their needs, many hospitals now have a ‘passport’ for you to complete. You can find a blank template to print out and fill in at: www.sussexcommunity.nhs.uk/downloads/services/learning_dis_health/ldhft-hospital-passport.pdf

- This website has more than 60 videos that help parents and children to prepare for common hospital procedures such as blood tests, CT scans, X-rays, ECGs and EEGs: www.whatwhychildreninhospital.org.uk.

During the stay

- As well as the ‘passport’, detailing your child’s needs, it may be worth having key information such as ‘Hayley uses signs to communicate’, on a piece of paper that can be taped above your child’s bed for all staff to see.

- If it is important that staff ask closed questions, use simple phrases and ‘listen on all channels’, make sure you have explained this to them.

- If your child doesn’t use speech, you may need to teach staff some signs or how to use your child’s communication book.

- You can read your child better than anyone else. If you notice changes in body language, mood or pallor, this could indicate they are in pain, too hot or too cold, so be sure to alert staff immediately.

- Be sure to tell everyone about any medication your child takes; some lower blood pressure, and new medications may be incompatible.

- If your child is on regular medication, check who will administer this while they are in hospital. If you plan to do it, you will need to sign to authorise this. If hospital staff are going to administer meds, expect them to be taken away from you.

- Don’t assume staff know everything about your child’s condition, or that information has been shared between departments.

- If your child is having an operation, ask if they can be first on the theatre list if you think they may find it hard to cope being ‘nil by mouth’ (going without food or drink), or if they are likely to be distressed or confused.

- Help your child stay in touch with friends and with school by email, it will make returning to school easier if they miss a lot. Most hospitals now have public Wi-Fi so ask about this before their stay.

- Many hospitals have a teaching service that can help your child to keep up to date with their studies.

‘If you don’t like the way they’re bandaging him, or they’re doing something that you know will upset your child – even though all the other children with that syndrome are bandaged in that way – you say so, you negotiate.’

Leaving hospital

Ask about discharge planning and assessments of need as early as possible. Agreeing who is responsible for funding nursing care, training, equipment, aids and adaptations at home can be complex and take time so it’s worth checking that your child’s community nursing team are anticipating their needs early on, or your child‘s stay in hospital may be longer than either of you would wish. Each hospital has its own discharge policy. Ask to see this before your stay if possible. And don’t forget to ask about an assessment of your needs as a carer too. For more on this, see here.

Preparing for health care in adulthood

For many services the switch from child to adult services happens at 18, but this can vary. It’s important to find out what happens with the specific services your child uses and to plan ahead as some things may change earlier. For example, if you manage your child’s online prescription requests, some GP surgeries automatically suspend parental access to the account once the child reaches their early teens. If you think your child won’t be able to manage their own prescriptions it’s worth flagging this with the surgery to ensure that you can continue to manage their medication for as long as is necessary.

From age 18, in-patient and out-patient care at hospital will usually be alongside adults. For acute health care, your child may attend adult clinics from 16, although some specialist consultants may continue to see a young adult after they are 18 years of age.

Health services are responsible for identifying whether a young person is likely to have on-going healthcare needs and to make sure these needs are met when they become an adult. They should ensure there’s a clear process for transferring responsibility and information, but parental involvement can also help this to go smoothly.

If your child has health needs, as part of their transition planning you’ll need to think about the switch from children’s to adult health services, to ensure they get the support they need. It is helpful if you can try to anticipate changes in your child’s health needs as they grow older and encourage them to take more responsibility for their own health, if possible.

Education Health and Care Plans (EHC Plans) include more detail about a young person’s health needs. As an EHC Plan continues until a young person is 19 years old, or 25 years in some cases, this should help with planning their transition to adult health services, as a number of things are different.

If you have had a community paediatrician from a Child Development Centre (CDC) overseeing your child’s health needs it’s important to know that once they reach 18 years of age, their care will be taken over by their GP.

Some services may also be less specialised. For example, a young person with joint problems may always have been seen on the same children’s ward, but once they reach 18 years of age they’ll need to use a general hospital ward, where the majority of other people may be elderly.

Other therapies and services may stop altogether, or not have an equivalent in adult services. For instance, your family may receive therapy from the Child and Adolescent Mental Health Service (CAMHS), but not from adult mental health services.

Your child’s GP

As your child’s GP will be central to their health care from the age of 18 it’s a good idea to think about whether he or she has the right GP to support them before they reach adulthood.

If you are happy that your child’s current GP is the right person to support them, it pays to build a relationship with them in advance. Make sure you talk to them early if there are things to discuss. Remember that, once your child is an adult, the GP will not be able to discuss their health with you in the way they can about a child.

If you think another GP would work better for your child, you could change to another doctor in the practice, or move to another practice altogether. The easiest way to find another GP who’s accepting new patients is through the NHS Choices website at www.nhs.uk. The website includes service reviews from other patients. If you’re not online, there should be a list of local GPs at your local library.

If a child is currently under the care of a community paediatrician, they should share information with the GP, but a parent plays an important role in helping the GP fully understand a child’s condition or learning disabilities. The truth is, after years of going to specialist appointments, reading reports about your child, and caring for them on a daily basis, you will know their condition inside out. Be prepared to share this knowledge with your child’s GP to bring them up to speed so that you can work together to ensure your child gets the best care.

The transition to adult health services

Preparation for the transition to adult services takes place from about 13 years to ensure that you and your child are ready and understand what to expect from adult services. For many services the switch from child to adult services happens at 18, but this can vary. It’s important to find out what happens with the specific services your child uses and to plan ahead. GPs see people of all ages, of course, but they will start to expect young people to see them independently from 16 or 17.

Community paediatricians can see a young person until they are 19 years old. In-patient and out-patient care at hospital will usually be alongside adults from 18 years of age. For acute health care, your child may attend adult clinics from 16, although some specialist consultants may continue to see a young adult after they are 18 years of age.

Some services, like speech and language therapy, may stop seeing your child at 16 if they leave school.

The Child and Adolescent Mental Health Service (CAMHS) may see existing patients until they’re 19, although new referrals are passed to adult mental health services.

Health services are responsible for identifying whether a young person is likely to have on-going healthcare needs and to make sure these needs are met when they leave school or become an adult. They should ensure there’s a clear process for transferring responsibility and information, but parents also have a role in helping this go smoothly.

Children’s health services are free, but adults have to pay for some things like dental care and prescriptions. However, if your young person is getting benefits or on a low income, they may be eligible for free dental treatment, free prescriptions, free eyesight tests and vouchers for glasses, free wigs, boots or other appliances and transport to and from hospital. For more information, go to: www.nhsbsa.nhs.uk/check-if-youre-eligible-help.

Prescription prepayment certificates

If your young person has to pay for prescriptions and they are on several medications, it may be worthwhile to look at getting a prescription pre-payment certificate (PPC). This allows you to have as many NHS prescriptions as you need for a set price. You can purchase a three-month certificate for £30.25, or a 12-month certificate for £108.10 (prices correct at time of going to press). If your young person needs more than three prescriptions over three months, or 11 over the course of a year, it will be cheaper to get the card. For more information go to www.nhs.uk and search for ‘prescription certificate’ or call: 0300 330 1341.

Tips for managing the transition

Health services have different arrangements so wherever possible, ask staff what will happen when transition to adult services takes place. Talk to staff and other parents to get information about choices you could make now.

There are steps you can take now that will ease the change. For example, you could arrange to visit a new clinic or ward before your child needs to attend. Some services offer a joint appointment with children’s and adults’ services just before the swap to adult services. Ask if this is an option.

Transition planning and the health care plan

Transition planning for children who have EHC Plans is covered in more depth in Planning for your child’s future. Some of our children have ongoing health needs so these will need to be focused on as you consider what help they will need in adulthood so it can be written into their EHC Plan. Other children may not have any particular health needs and you’ll just need to make sure their GP knows all about them and their needs in good time.

If your child does have ongoing health needs, health professionals are unlikely to be able to attend many, or perhaps any, of the transition planning meetings at school, but they can be asked to provide a written advice. Let the school know who’s involved in providing health services for your child, so they know who to ask. New professionals, such as a rehabilitation medicine specialist, adult neurologist or occupational therapist (OT), may need to get involved in planning for transition.

From Year 9 onwards annual reviews should planning to maintain good health in adult life. Health professionals involved in the management and care of your child should provide advice in writing and where appropriate, attend the Year 9 annual review. If your child has health needs that will continue into adulthood, the person who currently oversees their care should draft the first ‘health care plan’ following the meeting and this must fit alongside the EHC plan. They should advise on services likely to be needed and discuss arrangements for transfer to adult services with your child, the GP and you. Later, having obtained your child’s consent, they should make any referrals to adult health services and arrange the transfer of records.

If your child is also likely to have care and support needs at 18 from adult social care they should also have a transition assessment for this. This can be carried out alongside any health transition assessment. Again, the EHC Plan can be used to coordinate all three.

As with all transition planning, the health care plan is not a one-off document and it should be changed and added to as your child moves through transition. It should be completed in your child’s final academic year and may need updating again just before they leave school.

Encouraging independence

As parents, we’re used to looking after our children’s health and we’re good at spotting when they’re unwell or in pain. You will find more about helping teenage children make choices and communicate their opinions so they can become as independent as possible as adults in Involving your child.

Some young people with complex health and social care support needs will need help to express themselves. Other young people may have such profound needs they will remain dependent on adults for on-going care. But if it’s possible, letting others know you feel ill or that something hurts is an important skill to learn. It is okay to expect more information and to have a central role in the decisions made about you and your child’s life. It’s understandable if you want to keep a close eye on the health and care services your child gets as an adult, but encouraging them to think their feelings and opinions matter and should be listened to is also part of keeping them safe in the future.

The progress towards a young person gaining as much independence as possible begins with us as parents gradually handing over responsibility to the young person. For most young people, the road to independence includes learning to look after their own health needs.

Young people communicating their health needs

Young people with disabilities, chronic illnesses or learning disabilities have to learn to communicate their health needs as much as possible. It’s important to develop skills, relationships and confidence when speaking to health workers. An early step may be to ask health professionals to direct questions to your young person rather than addressing you.

You may need to help your child learn the right vocabulary or signs to talk about their body and health. One day they will need to be able to let other people know where it hurts or feels funny, without you to explain for them. Make sure your son or daughter knows when to share health information. It’s important they understand the difference between a doctor asking them to talk about their health, when they need to tell them about any problems they are having, and someone asking them how they are as part of a polite conversation, when detail isn’t needed and in fact might be too much information!

If anyone were to ask me what message I might have for others I would tell them that they should listen to, believe and respect young people. It’s very difficult to tell anyone how you feel when they won’t listen; if you aren’t believed then you stop believing in yourself; if you’re not respected then you lose your self-respect and everyone needs self-respect.’

A word about the Mental Capacity Act and health

When a young person reaches 16, they’re legally classed as an adult in terms of decision-making about their health.

The Mental Capacity Act 2005 covers your child’s rights to make their own decisions if they have ‘mental capacity’ – including decisions about health and medical treatment. It also sets out how decisions should be made with and for them if they don’t have the capacity to decide for themselves. In these circumstances, once your young person is 16, a medical professional is likely to be the decision-maker rather than you the parent. But the decision-maker should get the views of those close to the young person unless it is a medical emergency. See more on the Mental Capacity Act.

Bear in mind that children under the age of 16 can also be judged as being competent to make their own decisions about health care if they are seen to have the necessary maturity and understanding. For example, a GP or clinic could prescribe contraceptives in confidence to a 15 year old who asks for her parents not to be involved.

Confidentiality and medical records

The confidentiality of patients’ health information is enshrined in codes of professional conduct. Everyone has the right to have a copy of their medical records and the records should be presented in a format that patients understand. If the patient is under 18, anyone with parental responsibility can apply to see their child’s medical records, but if the GP or doctor responsible believes that your child is competent to make their own decisions about health, they should check that they consent to this. Once a young person is over 18 you’ll always need a letter giving their consent, or a ‘power of attorney’ to see them.

If for some reason you are denied access to your child’s medical records or their records have been lost, contact Healthwatch for help.

Transferring medical records to adult services

Sometimes a young person’s medical records aren’t transferred to adult services in time for their first meeting, which means you will have to go over the young person’s medical history at the first appointment. The benefit is that you have the opportunity of a fresh start with a new service. It’s a chance to establish new relationships with professionals and put any past misunderstandings and disappointments behind you. You’ll also be able to use past experience to explain your situation and say what your child needs or help your child to explain what they need.

Young people: managing medical appointments

Assessments, appointments, consultations or visits by health professionals can be stressful, worrying and tiring. It’s common for healthy, fit adults to forget a lot of what has been said and even more difficult for tired or anxious people. Bad news or painful information can come as a shock. It can feel difficult to ask the right questions to get the information you need. You may have lots of experience in handling this, but you need to consider teaching your young person how to cope, too.

‘I have found that even the most informed doctor or health person cannot provide the most basic of information if you don’t phrase the question in the right way. It’s frustrating because often you don’t know the right question to ask. The only way as I see it is to keep making it clear that you need clarity and detail. When I had to deal with the last problem which didn’t seem to have a solution, I asked the doctor what the possibilities were, and this got a much better response.’

The coping question

Sometimes, parents and young disabled or chronically sick people may say everything is fine and they’re coping, when this isn’t true.

You and your child face your challenges 24 hours a day, seven days a week. You know what the problems are and what some of the solutions may be. Tell the professional what your concerns and needs are, and help your child to do the same.

How to be prepared

Being prepared for each appointment with health professionals is important. It’s helpful to talk to your young person beforehand, when you both have a quiet moment to think at home, and write down all the things you both want to discuss. You or your child could also choose a friend to go with you to prompt you and remember what’s been said. Take a list of questions into the consultation, and note down the responses. It may take longer, but when you get home you’re more likely to have the information you need. Then you and your child can talk it over to make sure your child has understood, too.

Preparing can also be a positive opportunity to talk about issues together, as well as helping your child to practise thinking through their options.

‘There is an underlying principle that we should never assume anything. We’re always left having to assume, because we’re not informed adequately by the ‘experts’. It’s imperative to find out the facts, because, as we have all experienced, our assumptions are often incorrect.’

Tips for appointments

- Think ahead about the information you need from a consultation. Write questions down and involve your child as much as you can in this thinking process.

- Your child’s worries may be different from yours, so check if there’s anything they want to talk about or find out.

- Is there a leaflet or a website you can look at with your child so they can see where they are going and what equipment they may see there?

- Politeness, firmness, persistence and a good sense of humour help if the medical professional doesn’t seem to ‘get’ what you and your child need from them.

Well-being services in West Sussex

West Sussex Well-being has a website with useful resources to help people to manage their health and well-being. In addition, each district has a well-being hub. Go to: www.westsussexwellbeing.org.uk and click on ‘local well-being hub for more information and to find your nearest hub.

Sexual health services

Although it can be uncomfortable to think about your young person having a sex life, it is important to be informed and make sure that they know what sexual health services can offer. They provide:

- contraception, including long-term and emergency contraception

- access to condoms

- testing and treatment for Sexually Transmitted Infections (STIs)

- chlamydia testing for under 25s.

- pregnancy testing and counselling

- psychosexual counselling

Details of sexual health clinics and access to other services in West Sussex can be found at www.sexualhealthwestsussex.nhs.uk.

Mental health services

The teenage years can be an emotional rollercoaster for young people. As parents we know they’ll face the physical changes of puberty, but there are also psychological changes that will affect our children’s behaviour and emotional well-being. Many teenagers become more moody, self-centred or reckless and most will also have times when they feel anxious or low.

Some local secondary schools and colleges offer counselling for young people. If your child doesn’t want to be seen seeking help at school, they can get information and advice from the FindItOut Centres in West Sussex. Go to www.westsussex.gov.uk and search for ‘FindItOut Centres’ for more information. Worthing also offers a Find It Out Plus service, based at the library Community Hub. It offers information, advice and counselling for young people aged 11-25 living in Worthing & Adur.

For some young people, mental health issues during the teenage years may become more serious and, for a few, significant mental health needs may emerge. Persistent depression, high anxiety, serious eating disorders or really difficult or unusual behaviour are good reasons for looking for outside help.

If you’re worried about your son or daughter’s mental health, you can talk to your GP and they may refer you to Child and Adolescent Mental Health Services (CAMHS). Schools and other professionals working with your child can also refer to CAMHS. It provides help with a wide range of mental health problems for children and young people up to 18, and their families. CAMHS workers are based in the community or clinics and include a variety of practitioners including therapists and psychiatrists.

In Sussex, the YMCA runs a number of services to support young people’s mental well-being, including their Dialogue service. It also runs a Youth Advice Centre in Crawley which offers support with mental well-being as well as advice on many other topics such as money, employment and education. Go to: www.ymcadlg.org/what-we-do for more information.

West Sussex Mind also offers the Be OK Service for 16 to 25 year olds, which has youth workers who can offer face to face, peer, group and video support around mental health and well-being. Go to: www.westsussexmind.org and click on ‘help and support’. Choose ‘specialist services’ then click on ‘support for young people aged 16 to 25.’

For over 18s, there is a single point of access for mental health and well-being support via Pathfinder West Sussex, which is an alliance of organisations including Sussex Partnership NHS Foundation Trust and West Sussex MIND. They work together to support people with their emotional and mental well-being and offer a range of services including information, advice and sign-posting as well as access to clinical services for those who need more specialist professional support: www.pathfinderwestsussex.org.uk. They also support people stepping down from clinical services by linking them to local partners who can offer one-to-one support, group activities and peer support. Over 18s can also self-refer to the Time to Talk service, which offers talking therapy to people with mild to moderate anxiety or depression. Go www.sussexcommunity.nhs.uk and search for ‘Time to Talk.’

Doc Ready is a useful website to help young people who are experiencing to prepare for their GP appointment, and get ‘doc ready’ by building a checklist of what to talk about and learning more about confidentiality and rights. It’s designed to get a two-way discussion between the young person and GP flowing more quickly, so both parties get the most out of the limited time they have available in an appointment. Go to www.docready.org.

For young women, My Sister’s House Women’s Drop-in service operates across coastal West Sussex and offers support to help women with their well-being and empower them to maximise their potential. As well as support with mental health, they also help women affected by domestic abuse: www.mysistershouse.info.

Nationally, Young Minds supports all young people with mental health issues. Their website has resources for young people and parents, as well as a helpline.

Annual health checks for people with learning disabilities

All adults with learning disabilities should now be invited by their GP for an annual health check, which covers physical, mental and emotional well-being. There is a health assessment pack for the patient to fill in with the help of a carer before the appointment. The appointment should be longer than the usual GP appointment, so there’s time to talk and not feel rushed or confused. Local GPs have been trained so they understand more about learning disabilities and how to be helpful and clear. After the health check, the GP writes up a health action plan and sends it to the patient.

Parents who have been to one of these health checks with their son or daughter have been impressed with how thorough it is and feel the GP is better placed to support them as a result. Anyone over the age of 14 who is on their GP’s learning disability register can have an annual check. It’s a great way for your young person to start their transition to adult health care.

If your son or daughter has a learning disability and has not been offered a health check by the time they reach 18, ask your GP for one. For more, go to: www.nhs.uk/conditions/learning-disabilities/annual-health-checks.

Community Learning Disability Teams

There are three Community Learning Disability Teams in West Sussex. The Coastal Team is based at Centenary House, Worthing, the Northern Team at Parkside, Horsham, and the Western Team at Durban House, Bognor.

Community Learning Disability Teams consist of staff from Sussex Partnership NHS Trust and West Sussex County Council. They include NHS staff from a variety of specialities, including: learning disability nurses; occupational therapists; psychologists; physiotherapists; psychiatrists; and speech and language therapists. They are based with social care managers and social workers from West Sussex County Council and work closely to deliver the service in partnership.

The teams work with people aged 18 years upwards who have a diagnosed learning disability and complex health needs. They aim to support people with their physical and emotional health, as well as behaviours that challenge others. Referrals are taken from any source, although they prefer that referrals for eating and drinking needs come via GPs.

The intensity of support given is decided using an initial assessment of need. For families who have young people moving to adulthood, people working with them will consider how transition and other related issues may affect them. Staff may work directly with the young person, with their family, their wider network of support or sometimes indirectly. To contact the Community Learning Disability Teams call the Adult’s CarePoint, see Essential Directory for details.

For young people with significant challenging behaviour, there is an expert Enhanced Support Service that works across the Community Learning Disability Teams to improve outcomes. The overall aims of the enhanced support services are as follows:

- ensuring high quality care for those who present with complex challenging behaviour

- developing capable environments and reducing placement breakdown/in-patient admissions

- ensuring people are supported safely and effectively using the least restrictive approaches

- increasing quality of life

- working with family carers and people using the service to ensure outcomes are co-produced

- creative ways of working

- disseminating and discussing local and national guidance around this specific group

- training opportunities

- sharing knowledge and best practice

- developing evidence-based care though national agendas and policy

The Enhanced Support Service also delivers the West Sussex Behaviour Support Network, a venture between West Sussex County Council, Sussex Partnership NHS Foundation Trust, service providers and families in West Sussex who support adults with learning disabilities and/or autism who present with complex challenging behaviours.

Bringing together providers, practitioners and families in this field will support this work by providing a forum where stakeholders can develop and learn. The network will meet quarterly in a central location in West Sussex, which at the time of going to press may vary. There will also be an annual focus on parent carers’ experiences.

There is also a Specialist Clinical Assessment Service, designed for people without a diagnosis of a learning disability, who may have undiagnosed autism or other neurodevelopmental disorders. The service offers assessment, consultation and sign-posting. You can contact them by calling: 01903 846656, email: referrals.scas@sussexpartnership.nhs.uk.

Complementary medicine

Complementary medicine includes treatments like osteopathy, acupuncture, homeopathy, massage and aromatherapy. Some parents find these useful for themselves or their child. Other parents are often the best source of information, although some GPs have an interest in this field. Many of the established types have a governing body that can advise on finding qualified practitioners.

Occasionally, some complementary medicines are available under the NHS but usually it has to be paid for privately, although some practitioners will offer treatment on a sliding-scale of payment. For example, The Dolphin House Children’s Clinic in Brighton, which offers a variety of natural therapies, works in this way.

The Belltree Music Therapy Centre in Brighton is a professional music therapy service. Private clients can refer themselves to the service or referrals may be made by professionals such as paediatricians, speech and language therapists, social workers, and psychologists. Clients who self-refer will be charged for an initial assessment and for any subsequent treatments thereafter.

Further help on health

Many national organisations specialise in supporting families and individuals with a particular condition or disability, including Scope, Mencap, Young Minds and Arthritis Care.

Contact (https://contact.org.uk) can provide details of the organisations relevant to your child. Some of these national groups recognise the needs of young adults are different and provide specialist information, support or training for people in transition. Try asking them what they have available for young adults.

When there’s a problem

Patient Advice and Liaison Service (PALS)

PALS has been set up by NHS Trusts to provide advice and information about health and related services. They are a useful source of local and national information and, if they do not have the answers, will find the information or the right person to speak to.

PALS also help if you have concerns about local NHS care. PALS staff aim to resolve concerns informally through liaison with the relevant NHS staff. PALS will also advise on making a complaint, what the process involves, and signpost you to the NHS Complaints and Advocacy Service, which is independent of the NHS.

Healthwatch

This is a health watchdog intended to provide information about health services and give users a voice in how they are run. If you need advice or information about health services in West Sussex, or if you’re not happy with the service you or your child have received, Healthwatch should be able to help. If need be they can help to sort out problems on your behalf.

If you decide to make a complaint about NHS care or treatment, Healthwatch’s Independent Complaints Advocacy Service (ICAS) can help you – you can contact ICAS via Healthwatch. For more information, call 0300 012 0122, email helpdesk@healthwatchwestsussex.co.uk, or go to www.healthwatchwestsussex.co.uk.

Complaints about healthcare

If you are unable to resolve your concerns by using PALS or ICAS, you can complain directly to the Parliamentary and Health Service Ombudsman. The process has two clear stages: the complainant’s case is either resolved locally or taken forward to the Ombudsman. PALS can advise about taking complaints to the Ombudsman. You can find out more about the ombudsman at: www.ombudsman.org.uk.

Compensation

If you believe your child is the victim of a medical accident and could be entitled to financial compensation, you can take legal action against the person or establishment concerned. A good financial settlement could make a huge difference to a child’s long-term future, and to the peace of mind of parents and siblings. However, you also need to be aware of the possible drawbacks. You could speak to PALS first to look at other ways of resolving the issue.

Lawsuits can be very expensive and, unless you win, you will not get your costs paid. Legal Aid is unlikely to be available. The process can take a very long time, sometimes years. You will need plenty of stamina and, above all, good legal advice. If you do decide on legal action, you can get free preliminary advice from Action for Victims of Medical Accidents (AvMA). They can tell you whether your case is worth pursuing and can also suggest a good solicitor. Go to www.avma.org.uk.

Section two: Finding your way

Life-limiting conditions

One of the hardest situations that families can ever face is the news that their child has been diagnosed with a life-limiting or life-threatening condition. For some families this news may be given during pregnancy, or shortly after birth, while for others it may come years later, depending on your child’s condition and how it progresses. For a number of families there are additional difficulties because their child does not have a specific diagnosis, even if professionals are clear that the outlook is not good.

Every situation is unique, but one of the most important things is ensuring that you can make the most of the time you have with your child. Having access to clear information is essential, particularly if your child has multiple professionals from different services involved in their care and you are dealing with complex medical terminology as well as medicine, equipment and their other care needs. Clear information and planning ahead can help you to manage your child’s daily care and also make the best choices for your child and the rest of your family.

There are many organisations and charities that can support you, your child and the rest of your family with your child’s care and also help you to talk through concerns you have about what the future holds and how you can help your child to live as happy and full a life as possible. You might also want to discuss how you talk to your child about their diagnosis, how to support their siblings and how you will cope.

There are numerous resources online providing support and information to families. A Special Child in the Family is a website (www.specialchild.co.uk) based on a book written by Diana Kimpton, after her children were diagnosed with cystic fibrosis.

Together for Short Lives (www.togetherforshortlives.org.uk) is a charity that has a website with a directory of services to support families and a wide range of resources to read or download. You may find their booklet, Caring for your child at end of life – family guide, particularly useful. This can be downloaded by going to the section called ‘family resources’ and entering ‘end of life care’ in the search box, or fill in the contact form to order a copy. They also run a helpline and can link you to families who are in similar situations, so you have someone to talk to who understands what you are going through. The charity has also created a charter to set out what children and their families should expect from services:

The Together for Short Lives charter

- Every child and family member should be treated with respect and dignity.

- The child and family should be offered an individual care and support package that is built around their unique needs.

- A multi-disciplinary team should work together to support the family, and communicate with the child and family in an open and honest manner.

- Children and families should always be listened to, and be encouraged to talk through their wishes and care choices.

- At all stages of care, from diagnosis to death and bereavement, families should be provided with accurate and relevant information that they can understand.

- Where possible, children should be cared for in the family’s place of choice – in hospital, a hospice, or at home.

- Emotional, psychological and spiritual support should be offered to the child, and those close to him or her.

- Children and young people should be given the opportunity to access education and employment that is right for them.

- The child and family’s wishes concerning end of life care should be discussed and planned for well in advance.

- Support and care should extend to all family members, friends and all those involved with the child.

Diagnosis

The news that your child has a life-shortening or life-threatening medical condition is devastating. For some families, the news will be given at an out-patient appointment, while for others it might happen during a hospital stay. Although every situation is unique, you should have time after the diagnosis to discuss it and any questions you might have about your child’s condition or their with a nurse or other staff member.

You may find that you don’t recall everything that was said, or you may have questions afterwards that you didn’t think of at the time. You should be given contact information for your child’s care team or specialist, so do get in touch with them if you want to ask anything or have information clarified.

After diagnosis, you might be given a series of follow up appointments or be told that they will be arranged shortly. Your child’s GP should be told by professionals about the diagnosis and the plans that have been put in place to bring them home, if that is possible.

Depending on your child’s condition and their needs, you may require medication, equipment, training and even a specialist community team to provide support at home so, if your child has been in hospital you are likely to have contact with the community team to plan their discharge. Sometimes, if children have been in a specialist hospital, such as the Evelina, St George’s or Great Ormond Street, they might be moved to a local hospital first in preparation for their discharge home.

In some circumstances, families choose to transfer from hospital to a children’s hospice, where medical needs can be met for the child, the entire family can be supported physically and emotionally, and palliative care can be given in a homely environment.

Hospices

Children who have life-limiting conditions may spend time in a hospice, an environment in which most children can feel safe and receive specialist care. However, hospices are not just for end of life care. They also offer respite care for children who have complex physical and medical needs, and support for their families at every stage of their journey. Hospices are bright, welcoming places and parents often find the support they offer is invaluable, as they are extremely skilled in caring for all the family, including siblings.

The main hospice used by families in West Sussex is Chestnut Tree House Children’s Hospice, near Arundel. This is an excellent facility with highly trained staff who are extremely experienced in caring for children who have life-limiting conditions or complex health needs.

What is palliative care?

Palliative care is an approach that is focused on enhancing quality of life when a cure is not possible. It is not just for the end of life – it may be arranged while your child is receiving other therapies to treat their condition.

Palliative care aims to make your child as comfortable as possible by managing their pain and symptoms and it also provides emotional, practical and spiritual support to your child and your family. This is sometimes known as a ‘holistic approach’ because it treats the whole person and their family, rather than just the condition or its symptoms.

For many children, palliative care will be delivered by the West Sussex Continuing Care team. If your child’s care is managed by a specialist hospital care may be managed by their teams, for example, the Evelina Paediatric Palliative Care team or Great Ormond Street’s Palliative Care team.

Other specialist support

In addition to Chestnut Tree House, Rainbow Trust provides Family Support Workers to families of children with life-threatening or terminal illnesses. They can provide support at home, as well as to families whose children are in hospital. Please note that West Sussex is covered by their Surrey team.

Sussex Snowdrop Trust provides ‘nursing care at home’ to children with life-threatening or terminal illnesses. They give medication, and can also teach parents how to manage their child’s condition. The trust’s catchment area runs along the coast from Chichester to Littlehampton and as far north as Billingshurst. Children are usually referred directly from hospital.

Multi-disciplinary assessment of needs

Every family should receive a child and family centred multi-disciplinary and multi-agency assessment of their needs as soon as possible after diagnosis or recognition, and should have their needs reviewed at appropriate intervals.’

Together for Short Lives

After you receive your child’s diagnosis, you should be told which agency is in charge of co-ordinating your child’s care – often this is the community nursing team. They should also tell you who has been allocated as your key worker or lead professional from the team, as they will be your main point of contact.

Shortly afterwards, your family should be at the centre of a multi-disciplinary assessment so you can talk about your child and family’s needs and how they can be met to enable you to enjoy life together as best as possible. This will help professionals to draw up a care plan for your child.

Together for Short Lives has created four core care pathways as frameworks for professionals to use as a starting point for drawing up a plan to meet the needs of babies, children or young people with life-limiting and life-threatening conditions and those of their families. You may find these useful to look at when thinking about your child’s needs. They are available on the website. Click on the drop down menu ‘Changing Lives’ and select ‘Care Pathways.’ You can also find additional information on advance care planning at the Child and Young Person’s Advance Care Collaborative: http://cypacp.uk/parents-and-families.

Your child’s care plan

The care plan that’s drawn up should provide details of all the professionals and services required to meet the needs identified by the assessment, as well as what will be provided by each service.

You should be given a copy of the plan and asked which services you want the plan to be shared with. You should also be given contact information for services and what to do if you need to contact people out of hours.

Over time, needs will change, so this should be an ongoing process that discusses your child’s health and their symptoms, equipment and supplies needed, as well as their education and leisure needs. It should also consider the whole family’s emotional, practical, social, spiritual and cultural needs. If your child is a teenager, it may also consider transition and support into adulthood. You should be told when your child’s next review will be carried out, but if you want an earlier review or to draw up a revised care plan, ask for it to be brought forward.

In an emergency

An Emergency Health Care Plan, or Advanced Care Plan, is a document that you can create with a member of your health care team, to record and share your wishes with key agencies on how you would like your child cared for in an emergency or if their health deteriorates suddenly. It can, but does not have to, include your wishes about your child’s end of life. It does not mean that your child will not receive medical care and you can choose to override it at any time, however, it is a helpful way to discuss with your child’s medical team what treatments would be in their best interest; how to make a decision between medical treatment and comfort care or where these should be done together) and the difficult issue of balancing length of life against quality of life.

End of life care

It is immensely painful to have to think about planning your child’s end of life care, but making decisions and thinking about practicalities beforehand ensures that you can make the best choices for your child and family and also focus fully on supporting your child in their final days.

You should be provided with the care and support needed to help you decide on an End of Life Care Plan, which may be given by the Community Nursing team, hospital staff or children’s hospice. End of life care may last for just a few hours, days, months or occasionally years.

An End of Life Care plan sets out your wishes and those of your child about the type of care you would like them to receive, whether you would lie them to be cared for in your own home, a children’s hospice or hospital. You can also consider how you would like their symptoms and pain to be managed and whether invasive treatments and equipments are withdrawn so your child can die peacefully and without pain.

Although every situation is different, healthcare professionals can advise you on the choices that are open to you and your child and they will try to work with you to accommodate your wishes, as long as they think they are in your child’s best interests. Don’t be afraid to ask if you need more information or options explained to you in further detail.

The way you spend the last weeks and days of your child’s life will very much depend on your individual circumstances, but it is a time when you can make precious memories together. You may have things that you or your child wish to do, such as creating a memory box, making prints or moulds of hands and feet, taking photos or making and watching videos. Although it can be difficult to look back on photos and videos and there will be times when it is just too painful, it can be immensely comforting to know that they are there for the times when you might want to see them.

How can family and friends support you?

If you have other children, consider what childcare options you have and whether they are flexible. Siblings may benefit from some time away with family or friends, where they can play and be the focus of attention for a while. You may also need to consider emergency options if the situation becomes difficult or distressing, or you feel torn when you cannot meet the needs of everyone at the same time.

If you have well-meaning family or friends offering help, consider asking them to organise shopping or meal rotas, as this will give you precious time to spend with your child. It also helps other people to feel that they are doing something useful at a time when they may be feeling helpless.

If you are feeling overwhelmed by messages and calls, it can also be worth asking a relative or friend to be a single point of contact for your wider family and friends so they can pass on information on your behalf.

What happens after a child dies?

You should be able to spend time with your child immediately after their death. Professionals involved in your child’s care should be respectful of your cultural practices and how you would like your child to be cared for. If you have a faith, the spiritual care team or chaplaincy service can support in a spiritual or religious context, regardless of your faith.

Your child’s care team should have advised you in advance about the options available to you in the days immediately afterwards. You might be able to take your child home, depending on your individual circumstances. If your child was receiving care in a hospice, they may have a special suite in which you can spend time with your child.

The type of ceremony you hold is a very personal choice. You might wish to involved your wider family, friends and those involved in your child’s care, hold a smaller ceremony, a religious service, a private ceremony or none. Most funeral directors do not charge for babies’ and children’s funeral costs, but there may be other costs to consider.

Bereavement support

The services involved in your child’s care are often best placed to provide initial support to your family or explain what help is available. There are also a number of organisations that offer bereavement support, including face to face individual therapy and counselling, group work or online support:

Child Bereavement UK (www.childbereavementuk.org) offers support and guidance to bereaved families and runs a helpline, tel: 0800 028 8840.

The Child Death Helpline is run by volunteers who are themselves bereaved parents. They are supervised and supported by teams within Great Ormond Street and Alder Hey Children’s Hospital. The helpline is open every day of the year and supports parents and family members who have lost children of any age, even those in adulthood. Tel: 0800 282 986.

The Compassionate Friends provide information, a helpline, befriending and support to parents, grandparents and siblings who have suffered the death of a child. Tel: 0345 123 2304 or go to: www.tcf.org.uk.

Cruse Bereavement Care has three branches in West Sussex: Chichester and Arun; Crawley, Horsham and Mid Sussex; and Worthing and District. Some of their bereavement volunteers are specially trained to work with bereaved children and young people aged between five and 18 years. The branches offer a telephone answering service: 0300 311 9959 and there is also a national helpline: 0808 808 1677.

Together for Short Lives has a helpline: 0808 8088 100 in addition to their comprehensive online resources:  www.togetherforshortlives.org.uk.

Winston’s Wish specialises in working with grieving children, runs a helpline, an email service and also has a variety of resources on their website. Tel: 08088 020 021 or go to: www.winstonswish.org.

Section two: Finding your way

Social care and help with daily life

When you have a child with SEND, daily life is often more challenging. Getting the right support can make all the difference, so this chapter will explain how to get the support your child aged 0 to 18 needs; how their needs are assessed; support for you as a carer; the different types of care and services available for children; what equipment and adaptations are available. Then we’ll talk through what changes when your young person moves to adult services aged 18; how to get support and what types of care and services are on offer in West Sussex.

What is available?

Some services for children with SEND are county-wide. It’s also worth looking at mainstream or universal services, which are open to any families and can also be useful. Mainstream services are provided according to which area of the county you live in, so have a look to see what is available locally. When considering what support you need, think about what will best benefit your family – every household is unique, so your needs will be different to those of other families, even if you have children with the same additional needs or disability.

If you know other parents who have children with similar needs, pick their brains! Ask them where and how they got equipment, how they accessed a service, or simply how they cope. Don’t be afraid to ask professionals what is available. Local and national organisations can also be a great source of information and support. Consider asking friends, relatives or neighbours for support, too, as many will be happy to help.

How to access services

Your health visitor

When your child is very young, your health visitor is a useful first point of contact. They should be regularly monitoring your child’s development and listening to any concerns you may have, and will usually refer your child to a specialist if they think it necessary, or if you ask them to. Most health visitors will work with children up to the age of five, but there are also specialist health visitors for children with SEND, who work with children aged up to eight and beyond in some cases.

Children and Family Centres/Family Hubs

At the time of writing, a number of local authority services in West Sussex are being reorganised, including Early Help services. Currently, Children and Family Centres are operating throughout the county and offer many of the services listed below.

From January 2022, Children and Family Centres will be replaced by twelve Family Hubs, offering support to all families of children under the age of 18 with a focus on under fives, or up to 25 years if your child has a disability. They will offer access to:

- information, advice and support

- help to find childcare

- health clinics

- voluntary and community groups

- sensory toy libraries

- FindItOut Centres for young people

- crisis support

- additional support for families of children and young people with SEND.

Family Hubs will be located at Bognor Regis: Treehouse; Chichester; Crawley: Bewbush and Broadfield; Worthing: Durrington, Footprints (Worthing Library) and Lyndhurst Road; Haywards Heath; Horsham: Needles; Kingston Buci; Lancing; and Littlehampton. To find out what support might be available to your family go to: www.westsussex.gov.uk/fis and click on ‘family activities and support’ then choose ‘children and family centres/family hubs’.

Parent carers can also ask for support through a number of other channels, including the Integrated Front Door (see Essential Contacts), their health visitor, GP, or West Sussex Young Carers, for example.

Extra support

Many families will get the support they need from universal services, but for those whose needs are more complex, support can be given through Enabling Families and/or Early Help.

Enabling Families

This service provides support for families with issues such as behaviour, play, healthy lifestyles and parenting difficulties. An Enabling Families appointment can identify whether a family may need further targeted support such as Early Help. You can arrange an Enabling Families appointment by calling the Integrated Front Door, or ask your health visitor, GP, midwife or preschool.

Early Help

Early Help focuses on giving each child the best start in life, by helping parents-to-be and families with young children. The aim is to work holistically with families as soon as possible, as the more fully families are supported in the early years, the less likely they will need higher levels of help later on. However, if families need additional support beyond what they are already receiving, workers can identify this so that a higher level of support can be put in place without delay.

Some families may only need support temporarily, but the thought of ‘going alone’ after you’ve had help can seem quite daunting. So rather than stopping abruptly, help will be gradually stepped down, so that support workers can be sure that families are confident and able to fully manage on their own.

Contacting a social worker

Some of us didn’t ask for help until we reached crisis point and felt we couldn’t manage any more. Other parents realised, as they gradually got to know the SEND system, that the backing of social workers was essential for getting the help they needed.

Before you talk to a social worker, try to think about how your life has changed and become more difficult as a result of caring for your child with special needs, and what kind of help you think you all need, now and in the future.

‘I think you cope, you don’t really ask for help when you’re feeling articulate. You usually end up waiting until you’re not articulate and everything’s gone to pot, and that’s when you need these people.’

Many of us only asked for help when we were desperate and felt we couldn’t cope any more. If you think that you need help, try to ask for it before you reach crisis point.

‘What I realised after I’d asked for help was that my entire life had been out of control for ages. I thought I was coping – I thought I was keeping the lid on the pan.’

The Integrated Front Door

The Integrated Front Door (IFD) is the contact point to use if you want to make enquiries or a referral to Early Help and/or children’s social care. It aims to provide a single and consistent point of access to advice, guidance and decision making about the right level of help needed to keep each child safe or achieve change as part of an early help response.

After you have called the Integrated Front Door, the referral will be reviewed by a specialist Children with Disabilities social worker. He or she will decide whether to offer an assessment via the Children with Disabilities Service within 48 hours.

When you are triaged by the social worker, if it is felt that your child’s needs cannot be met by universal services, you may be referred to a specialist social worker from the Children with Disabilities Service. They will do a Child and Family Needs Assessment to find out more about your child and family what support is needed. This should happen within ten days of the decision that your child and family meets the criteria for an assessment. Once the social worker has visited, their assessment should be completed within 45 days, as they may have to contact other professionals, such as those from education and health so that they can get a broader picture of your child and their needs.

Children who do not meet the eligibility criteria for the Children with Disabilities Service may still be entitled to services as children in need and may be referred to other teams within Children’s Services, such as Early Help or signposted to targeted short breaks, for example.

Children with Disabilities Service

The Children with Disabilities Service consists of five teams working across the county with children aged 0 to 18 who have one or more of the following:

- a severe or profound learning disability;

- a severe or profound physical disability;

- complex health needs related to a lifelong or life-limiting disability;

- autism

- a combination of disabilities, which individually are not severe, but cumulatively have a similar impact to a severe disability

- in order to be eligible they must also have one or more of the following needs: behaviour that challenges; need for constant supervision day and night where no longer age-appropriate which is affecting the family; needing help with basic self-care where no longer age appropriate; severe developmental delay; severe communication needs; sensory communication needs; other neurological conditions such as foetal alchohol syndrome (FAS).

The Choice Team also works within the Children with Disabilities Service, supporting families whose children have stable support packages that only need to be reviewed occasionally.

How is a Child and Family Needs Assessment done?

When a social worker arranges to carry out a Child and Family Needs Assessment, they will book a visit to your home at a time when they can meet your child and, where appropriate, include them in the assessment.

Before the meeting, it can be helpful to think about whether your child’s siblings should be present, particularly if there are things you don’t want to discuss in front of them. If you are a single or lone parent, it might be useful to ask a friend or relative along to support you. For some of us, preparing your child for the visit and letting the social worker know if there are any routines that your child has, or triggers that might upset them can help to ensure the meeting goes as smoothly as possible.

The social worker will carry out interviews with your family and the assessment will take account of your needs as a carer, and those of siblings or young carers, as well as those of your child. To ensure that your needs are assessed fully you can ask for a separate Carer’s Needs Assessment. If your child needs equipment or adaptations, an occupational therapist from West Sussex County Council will carry out their own specialist assessment, see here.

After the assessment, if the social worker recommends that a support package is needed, they will take the request to the Disability Resources Panel, which meets on a fortnightly basis. The panel consists of professionals from the local authority and is attended by staff from the SEND commissioning team as well as the Short Breaks Co-Ordinator. You will be updated about the panel’s decision by your social worker. If you are unhappy with the decision, you can appeal the decision by writing to the Chair of the panel, but this must be done within ten days of the meeting.

There are regulations that require social services to make formal plans for supporting children. This includes producing a Child In Need Plan, which is agreed with the parents and involved agencies. The plan set outs which agencies will provide which services and includes any expectations of you and your family. The plan should then be regularly reviewed. The Child In Need Plan can be updated if the needs of your child and family change over time. If you feel that things aren’t going well, you should discuss this with your social worker.

Tips for working with social workers

Many of us have had lots of contact with social workers over a number of years and we suggest you have a look at Survival strategies for some practical tips for working with professionals. Here are a few extra tips:

- Just because you get a ‘no’ this time, don’t take that as a final answer. And even if you get a ‘no’ now, don’t be afraid to ask again as your needs and your child’s needs change.

- Find out what other parents have and how they managed to get it. Inside knowledge can be very useful!

- Get people such as your GP, consultant and health visitor on side. Ask them to write letters for you to explain what you need and why it is so important.

- It’s vital to build up a good relationship with your GP and social worker so that when you are desperate they already know who you are and what you and your child’s problems are.

- However, if you’re not happy about the way things are going in your contact with social workers, don’t feel you can’t say so.

- Challenging decisions or making complaints can be stressful, but unfortunately it is sometimes necessary.

Who’s who?

Community Family Worker: works in the home alongside the parents, offering practical and emotional support.

Duty Officer: a social worker or social work resource officer who is taking their turn on the ‘duty desk’, taking new referrals and dealing with emergencies.

Early Help Key Worker: helps families with multiple or complex needs who require coordinated multiagency support, to prevent the need for statutory social care intervention.

Key Worker: keeps families informed about services for their child and ensure professionals have all the information they need to provide a good service. The key worker coordinates service provision to minimise duplication and stress for the family.

Occupational Therapist (OT): Social care employ their own team of occupational therapists, within the Independent Living Service. The team offers assessments, advice, equipment prescription and housing adaptation advice for individuals with long-term disabilities within their home or foster placement.

The NHS Occupational Therapy service: carries out interventions within schools; assessment and advice for hospital discharge and short-term needs of under six months. It also has input within Child Development Centres, Children and Family Centres and nurseries. Health occupational therapists can also provide some equipment for the home.

Social Workers: can offer advice and counselling to families. They assess what kind of help you might need and try to get it for you. They can offer ongoing emotional and practical support to families.

Phrases you may hear

Care Package: this is the extra help you get after your needs assessment. It might, for example, include short breaks, a session with a community family worker or some social work support.

Carer’s Needs Assessment: if you are the person most closely involved in looking after your child and he or she is having, or is eligible for, an assessment of their needs, you will be entitled to a Carer’s Needs Assessment in your own right. Ask for one to be done.

Initial Needs Assessment: to decide on the extra support your child needs, the social worker will come to your home to find out more about your situation. They then write a report, giving details of your needs. This report is called an Initial Needs Assessment. Any help your child receives should be based on it. It also includes the needs of parents or carers and the family as a whole, including siblings.

Multidisciplinary/multiagency: where all the professionals or organisations providing treatment or support come together to assess or discuss your child or family situation.

Outreach: this is where a worker comes out to you and/or your child, rather than you having to go to them.

What type of support is available?

Short breaks or respite (0 to 18 years)

Short breaks are organised activities or care (outside of school) that gives your child a chance to have fun and socialise, and you a chance to take a break from your caring responsibilities.

Short Breaks

A short break might be an inclusive after-school or holiday club, a social group for children with similar disabilities, holiday playschemes or a few hours care in your own home. It may also be an overnight or residential stay if your child has more complex needs.

‘When I felt guilty about having some ‘me time’ a friend soon set me straight, saying, “You can’t pour from an empty cup, Helen. You need to look after yourself to be able to look after your family!” and I realised she was right. I can’t give my all if I am completely drained.’

The other benefit of a short break that works is that it can be a great confidence booster, for both you and your child. You find out that you can let your child go, and your child finds out they can enjoy life away from the family. Some of us have found that this really pays off in the long-term, because our children have learned to adapt to new situations and experiences much better than they might have done otherwise.

Don’t be put off, however, if the first short break you try isn’t a good fit. Sometimes you need to try several before you find the right one for your child. It is well worth the effort to get it right, though. Many of us have found that short breaks are an absolute life saver and also something that our children really look forward to attending.

Your local authority has a duty to tell you about their range of short breaks available, their eligibility criteria and how to apply. You can find out what is available in your area by looking at the Local Directory at the back of the book, where Short breaks entries are marked ‘SB’. You can also find out more by going to: www.westsussex.gov.uk and searching for ‘short breaks for disabled children’ then clicking on the document entitled Short Breaks statement 2021-24 . This is an information booklet that tells you what is available, how to access them and the eligibility criteria for different types of short breaks. You can also find out more on the Local Offer.

Who can access Short Breaks?

West Sussex County Council Short Breaks Services are available for disabled children and young people who are resident in the county. Daytime short breaks can be accessed by any child under 18 years with additional needs in receipt of middle or higher rate Disability Living Allowance (or the standard or enhanced rate of Personal Independence Payments (PIP) if over 16).

For families of children and young people who have a similar level of need but are not receiving DLA, short break providers offer a simple self-assessment to assess eligibility. If you are unsure whether you meet the criteria, you can email the SEND commissioning team for advice at: SENDCommissioningteam@westsussex.gov.uk.

You can organise daytime short breaks and short-term individual one-to-one support yourself directly by contacting the short break provider. You should not expect to pay more for your child to attend than any other child. It’s important to note that at the time of going to press the Covid-19 pandemic means that some providers have had to reduce numbers to keep everyone safe, while others have moved to a mix of face to face and online offers, so it is best to check with them to see what is currently on offer.

If you want your child to access overnight short breaks, you will need to contact your local children’s social care team via the Integrated Front Door (IFD) for an assessment of need. If your child meets the assessment criteria and is considered eligible for overnight short breaks, social care workers will work with you to draw up a care plan that sets out the kinds of support they will get. This plan (which may be part of their EHC Plan, if they have one) will be reviewed regularly.

Bear in mind that more specialist short breaks can be hard to get and not all disabled children will be eligible. There is also a heavy demand for these services so you will probably have to wait. But it’s worth being patient, as good quality respite care is essential, especially for families whose children have complex needs.

Care at home and in the community (0 to 18)

There are a number of organisations in West Sussex that provide care at home and in the community, including:

Tu Vida (formerly Crossroads Care)

Tu Vida is a charity that provides support to 11 to 18 year olds with medium to high needs who are socially isolated or not in education give you a break as a carer.

Support is tailored to the needs of the carer and the young person. The scheme’s assessor visits to assess your needs, then you make an agreement about what would help most. For further information, contact Tu Vida on: 01903 790270, or email them at: westsussex@tuvida.org.

Children’s Continuing Care Service

The NHS provides health care in a non-hospital environment to both children and adults who have substantial or critical needs arising from a disability, illness or injury. To qualify the person in question must have a primary health need and have a complex medical condition with substantial ongoing care needs.

Continuing Care is provided after an initial assessment by a relevant health or social care professional. This is followed by a more detailed assessment by a team of professionals which is co-ordinated by a Continuing Care Nurse. To find out more ask a health professional working with you and your child for more details.

After-school, holiday clubs and buddy schemes

For many parents, the most helpful kind of short break is an activity or play scheme that takes place after school, at weekends or during the school holidays. More information on these sorts of options are listed in the Social Life chapter and can also be obtained from the Short Breaks Team by emailing: SENDCommissioningteam@westsussex.gov.uk.

Childcare

The Family Information Service has a searchable list of registered childminders, playgroups, nurseries and after-school clubs in West Sussex on the website link below. It also offers an extra support service that can help you find suitable childcare if this might not be straightforward for your child. For more information, call: 01243 777807, email: family.info.service@westsussex.gov.uk, or visit the website: www.westsussex.gov.uk/fis.

Foster care

West Sussex County Council sometimes use their fostering service to provide overnight or short breaks for children and young people with special needs. The children and young people are cared for in the foster family’s own home. All carers go through a rigorous fostering assessment and care is taken to match suitable families.

Residential services

There are a number of facilities in West Sussex providing short and long-term respite care for children with special needs under the age of 18. These include:

- Cissbury Lodge (Worthing) – residential home for eight to 18 year olds with severe learning and physical difficulties. Provides both short and long-term care.

- Chailey Heritage Home from Home Residential Service – is designed for children and young people aged up to 19 years with complex physical disabilities and associated health needs. It offers flexible boarding packages including termly, weekly, fortnightly, and 52-week care, as well as short breaks and holiday activities.

- The Finches Short Breaks Centre – this fully adapted Chailey Clinical Services bungalow provides short-term residential respite breaks in Burgess Hill for children and young people with complex disabilities or health needs with full NHS nursing care on site. A referral is required from an NHS clinician or the health/local authority lead manager responsible for buying specialist services.

- High Trees (Crawley and Horsham) – provides residential or daytime short breaks for up to six children with severe learning disabilities aged between seven and 18 years.

For more on residential respite services, contact the Children with Disability Service via the Integrated Front Door.

Children with life-limiting or life-threatening illnesses

The three organisations below offer specialist support to families whose children have life-threatening or life-limiting illnesses. You can find out more about support for children with life-limiting conditions in the dedicated chapter.

Chestnut Tree Community Team

Chestnut Tree House near Arundel has a team of nurses and care support workers who provide support to families of children with life-limiting or life-threatening illnesses at home and in the community. Types of support includes: at home care in order for you to take a break; clinical nursing care; overnight respite care for your child at the hospice; end of life care, pre and post-bereavement support.

They also run a number of fun days and activities at the hospice itself that children receiving community support are eligible to attend.

Rainbow Trust

Provides Family Support Workers to families of children with life-threatening or life-limiting illnesses. Support at home can include: helping with practical tasks at home; spending time with your child or their siblings; helping children remain in school by assisting with transport, and so on. They can also support families of children who are in hospital.

Sussex Snowdrop Trust

Provides ‘nursing care at home’ to children with life-threatening or terminal illnesses. They give medication, and can also teach parents how to manage their child’s condition. The trust’s catchment area covers Emsworth, Chichester, Bognor Regis, Selsey, Arundel, Billingshurst, Petworth and Midhurst. Children are usually referred directly by a consultant paediatrician.

Equipment and adaptations

If your child has severe physical difficulties that make it hard to manage everyday things, such as mealtimes, toileting, or getting around, they may need additional support and facilities at home to help with daily living. These needs may change as they grow older or their circumstances change.

In West Sussex there are specialist occupational therapists (OTs) to assess children and young people with a permanent and substantial disability. If your child is under 18, contact the Integrated Front Door, see Essential Contacts for details.

OTs can help parent carers by providing advice, and support, and equipment where needed, to help children and young people with special needs and disabilities maximise their independence, wellbeing and their dignity at home. Note that the waiting time for assessment varies, based on demand and also on the number of urgent referrals received.

Individual needs can vary greatly, so OTs offer specialist functional assessments at home to work out how difficulties can be overcome and independence can be maximised. The types of things an OT will look at include: accessing the home and garden; getting in and out of bed; seating; washing and dressing; toileting; and bathing/showering.

Once individual needs have been identified the occupational therapist will offer advice and information. They may also provide equipment to meet the assessed needs.

Adaptations to your home

An adaptation is a change or changes to a property that mean a disabled person can move more freely and independently around their own home.

Examples of adaptations include widening doors or installing a stairlift, through to installing wet rooms and specially adapted bedrooms. Adaptations may be made to a home that is owned, rented from the council or from a private landlord.

If you need adaptations to your home, funding may be obtained through a Disabled Facilities Grant (DFG). Any work carried must be considered essential and not just desirable. It’s important to note that you cannot get a grant for work that has already started.

The maximum amount that can be awarded is £30,000 and Disabled Facilities Grants are NOT means tested for families of disabled children under 19, but your income will be taken into account for any amount over the £30,000 threshold. Once a formal application for a DFG has been received by a local authority, they must make a decision within six months.

Although most local authorities ask for an assessment from an OT or social services to help them decide if the work is ‘necessary and appropriate’ to meet your disabled child’s needs, it is possible to make the application for a Disabled Facilities Grant while you wait for an OT visit and assessment. Your local authority will have a form that you can fill in or you can apply by writing a letter. There is more detailed advice on applying for a Disabled Facilities Grant, as well as adaptations and equipment on Contact’s website: www.contact.org.uk. You can also contact their helpline for information.

Moving home

It may be that your present home isn’t suitable and can’t be adapted to meet your child’s needs. If you are a council or housing association tenant you should speak to your housing officer about moving to a more suitable home. Occupational Therapists from social care can provide advice on rehousing and potential adaptations to properties being considered.

Although it’s often a long wait if you need specially adapted accommodation you will have a better chance of moving, or your name can be passed to another housing association that has appropriate flats and houses. If you rent your home from a private landlord it can be even more difficult to make it suitable for your child’s changing needs.

Your local council housing service can give you information about getting onto the council or housing association waiting lists. They may also know about local estate agents who have information about adapted properties for sale in the area.

Community Equipment Service

After the assessment, some things such as toilet seats, grab rails, hoists, bath aids and temporary ramps may be prescribed to you by the OT and will be supplied by the Community Equipment Service. See Essential Contacts for details. It will be delivered to you and, if necessary, safely fitted. You can also access community equipment through your GP, physiotherapist or community nurse.

Choosing Equipment

There are constant changes and developments in the kind of equipment and gadgets available. If large expensive items are recommended, make sure you try them out before making a decision: you need to see how they would work in your own home. Don’t be rushed or rush your child into making a decision and make sure you listen to what your child is telling or showing you. For example, if your child is upset or experiences pain being lifted by a hoist, alternative slings or equipment may need to be considered.

If an assessment identifies that your child needs certain equipment, and they receive Direct Payments, you should be given the option to use them to buy what they need. Sometimes, it is possible to top up the Direct Payment yourself to buy a more expensive piece of equipment, so long as it still meets your child’s needs.

The Disabled Living Foundation website has information on everything from clothing to communication and play equipment. It also has a forum, Yourable, where you can share information and get help and advice from other members: www.livingmadeeasy.org.uk.

It can also be worth going to one of the annual exhibitions for equipment. Disabled Living organises free Kidz to Adultz exhibitions offering information and advice on: mobility; seating; beds; communication; education; toys; transport; sensory issues; sports and alternative funding streams for disabled children and young people. Go to: www.kidzexhibitions.co.uk.

Wheelchair and Seating Service

If you need a wheelchair for your child you can get one on loan from the West Sussex Wheelchair and Seating Service, which has branches in Bognor, Horsham, and Worthing. You will need a referral from a healthcare professional, such as your GP or physiotherapist.

Specialist equipment

For specialised equipment, Chailey Clinical Services has a rehabilitation engineering unit, which will custom-make or specially adapt existing aids to suit your requirements. Others like REMAP and MERU will try to make equipment to suit your child’s individual needs, which you may not be able to get anywhere else.

Whizz-Kidz is a charity that can often help with financial costs where, for example, you’d like your child to have a better wheelchair than can be provided on the NHS. Whizz-Kidz may be able to make up the difference in cost if you can’t afford it yourself. If your child needs specialist equipment at their childcare setting or school, you should discuss this with them.

Other kinds of practical help

This section includes a range of other schemes that can help with day-to-day living. For information about the schemes which primarily offer financial help, such as Motability and Family Fund, see the Money Matters chapter.

Continence support for children with additional needs

If your child or young person has ongoing continence or toileting issues, you can ask for support from tier 1 services – usually the school nurse or health visitor in the Healthy Child Programme – and an appropriate toileting plan can be put in place for them.

After these strategies have been put in place, they will be reviewed by the health professionals. If progress has not been made they can refer your child on to the tier 2 specialist Children’s and Young People’s Continence Team. This can be accessed by children aged between three and 19 years. Referrals are accepted for:

- constipation and soiling: age three and up.

- toilet skills assessment: age three and up if a child has an identified additional need.

- day wetting: age four and up.

- night wetting: age five and up.

To contact the Continence Team call: 01273 242145 or email: sc-tr.childrenscontinence@nhs.net.

Sight and hearing difficulties

West Sussex’s Rehabilitation Officers for the Visually Impaired (ROVIs) provide specialist information, advice, assessments and equipment to support independence for people of any age with visual or hearing impairments. They deal with referrals for people with sight or hearing difficulties, their friends or family or other professionals.

Based at the Adults’ CarePoint, you can contact them by calling 01243 642121 or emailing: asvisual.impairment@westsussex.gov.uk.

How is care funded for under 18s?

Most help available for families is free. You shouldn’t be charged if you receive certain elements of Universal Credit (or Income Support, Working Tax Credit or Child Tax Credit under the legacy benefit system). Many parents are happy with the way their needs have been assessed, but then find there’s a waiting list for those things their assessment says they need, like outreach and short breaks as budgets are almost always very stretched.

If your child has been assessed as being eligible for social care, they may be allocated a Personal Budget, which is the amount of money the local authority has decided is necessary to arrange your child’s care and support. A Personal Budget can be allocated to you directly as a Direct Payment so that you can organise and pay for things like short breaks yourself. If you prefer, the local authority can hold onto the money and arrange support on your child’s behalf. Or you can have a mixture of both. So if you’ve been assessed as needing a service, ask your social worker or short breaks assessor to explain more about Direct Payments and Personal Budgets and how they could work for you.

If your child’s disability involves on-going medical treatment or help, the local health authority may be asked to contribute towards the cost of extra help such as outreach care. This is known as ‘joint funding’. However, it can take a long time to get everyone involved to agree on who will pay for what.

Personal budgets

The way services are organised for people who need extra care and support has changed. If your young person has been assessed as being eligible for support, you can choose to be given money to organise and pay for their support or services yourselves instead of relying on a ‘one size fits all’ package decided by the council. This is called a ‘personal budget’.

A personal budget is meant to help the young person or you as their parent, decide how much control you want to have over arranging their care and support, by seeing how much money is available to buy the care that is needed.

The Children and Families Act 2014 gives young people and their families the right to request a personal budget as part of an EHC Plan. The Care Act requires local authorities to include a personal budget in the care and support plan or care element of an EHC Plan for young people over 18.

How do personal budgets work?

A personal budget is the amount of money the local authority has worked out it will cost to arrange the necessary care and support for your child or young person. Personal budgets allow support to be arranged in a number of ways. You may choose to receive your child’s personal budget as a Direct Payment, which you can use to arrange and pay for their support yourself.

Alternatively, the council can use your child’s personal budget to arrange the support on their behalf – this is called a ‘managed personal budget’. Or their social care and support may be a mixture of both direct payments and ‘managed’ care.

‘The problem we now have is that she is getting heavier and one person can’t lift her, so if we had any respite we’d have to have two people.’

Direct payments

Direct payments are the main type of funding associated with personal budgets. You can use direct payments to employ someone, often known as a ‘personal assistant’ (PA), to care for your child, or to buy into a local service like an after school club or holiday play scheme, but you can’t use them to buy into a service run by West Sussex County Council – these would be arranged separately as part of the personal budget, as you cannot purchase their services directly.

Unless there are exceptional circumstances you cannot use direct payments to employ a close relative who lives in your household, although you can use them to employ a relative who lives elsewhere.

Until a child is 18, parents can use direct payments to arrange and pay for services for their child. Young people over 16 can take responsibility for direct payments or, if they are 16 or 17, choose to share the responsibility with their parent.

Once a young person is 18, they can still get a parent or carer to receive their direct payments and arrange support for them if they prefer. In this case a parent or another person manage their child’s financial affairs as an ‘appointee’.

If your young person is assessed as needing support, they can’t be refused direct payments if they want them. The law says local authorities must tell you about direct payments and support you if you want them. If you’re already getting services, your child’s social worker should already have told you about direct payments.

Why choose Direct Payments?

Direct payments are worth thinking about, especially if your child has been assessed as needing a service but has been on the waiting list for a long time. They may also work if you feel you’re having to fit in with what’s on offer, rather than getting the services that would most benefit your child.

Direct payments give you greater flexibility, but be aware that you will need to take responsibility for finding and organising the support or services you want and for keeping accounts and records of how the money is spent.Independent Lives has a website with advice on everything from direct payments to personal budgets and employing a PA. For more information go to: www.independentlives.org or call: 01903 219482.

Personal Assistants (PAs)

Some people assessed as needing home care services choose to get Direct Payments so they can employ their own Personal Assistant (PA). A PA is someone who provides support to disabled children and adults. They may offer support with every day activities such as shopping, leisure activities, washing and personal care.

Independent Lives’ website has advice on employing a PA. You can advertise for a PA on their vacancies board, or use their online database of PAs to find the right person for you. They can also offer a payroll service if you are employing a PA and need help with this. www.independentlives.org.

For more on Personal Budgets, Direct Payments and Personal Assistants, see Money Matters.

Your needs as a carer

Parent carers are used to having to cope and asking for help can be difficult, but your needs as a carer matter, too. As a carer you are entitled to an assessment of your needs, even if your young person has not been assessed or is not receiving any services from the social care. You can ask for a carer’s needs assessment via the Integrated Front Door, or the Adults’ CarePoint if you care for a young person who’s over 18, see Essential Contacts for details.

If your child is having a needs assessment, your social worker should make you aware of the right for you to have a carer’s needs assessment during their visit. Although separate, the carer’s assessment can happen at the same time as your child’s needs assessment.

‘As parents, we feel we should cope; we push ourselves time and again. I’ve learned that at certain points I can say, “I’m sorry I can’t do this anymore.”

The Carer’s Needs Assessment

If your child regularly relies on you for care you have a legal right for a Carer’s Assessment. It supports carers by ensuring:

- their work, education, training and leisure needs are considered.

- That as the carer, they have a choice about the type of caring tasks they do.

- The young person they are caring for gets the right support and services.

‘I personally found the Carers Assessment emotionally draining. Thinking about my role as a carer, Rachel eventually living away from the family home and what might happen to her when I am no longer around were really difficult issues to verbalise. These and other difficult issues needed to be raised but were terrifying.’

Tips for a Carer’s Needs Assessment

- Be realistic about what you can manage in the long-term and when your son or daughter is not at school or college every day.

- Don’t hold back. Spell things out and don’t expect others to read between the lines.

- Try to get reports and supporting material before you apply to back up your case.

- Make sure your needs as a carer are fully considered.

- Talk to people who have managed to get funding so you can learn from their experience.

- If you are turned down at first, get a written reason why. Try to address the problem and reapply.

- If you need further support and information about social care contact Carer’s Support West Sussex: www.carerssupport.org.uk.

- If you need an interpreter for this assessment, the Local Authority should provide one.

- Make sure you are getting all the financial support and benefits you’re entitled to as a carer. They can help with some of the costs of caring, or contribute towards your pension entitlements in the future.

Other support for carers

Discussing ideas and tips regarding services and provision, and sharing worries and concerns with other parent carers can help you feel as though you’re not alone. There are numerous local groups for parent carers where you can find support – more details can be found in the directories at the back of the book. There are also a number of support groups for carers. You can find out more at www.carerssupport.org.uk, who also offer phone support and counselling. Call: 0300 028 8888 for details.

‘People have different thresholds. You accept your own threshold and never question whether it’s reasonable to have to do all that you do.’

The Carer’s Health and Well-being Fund

The Carer’s Wellbeing Fund is run Carer’s Support Carer Forum. If your application is successful, the money could go towards things such as paying for a gym membership to help you stay fit and healthy, or you may choose to use it to do a course or have a break without the person you are caring for. More information can be found on the Carer’s Support website: www.carerssupport.org.uk, tel: 0300 028 8888.

Carer’s Discount Card

Carers Support West Sussex has teamed up with various local businesses to offer discounts for carers. If you are registered as carer with Carers Support West Sussex you can apply for a card by email at info@carerssupport.org.uk. If you are not yet registered as a carer with Carers Support West Sussex, fill in their form: at www.carerssupport.org.uk/register or call 0300 028 8888. The card can also alert people that you are a carer if there is an emergency.

Carer’s Emergency Contact Card

This is a small card with a message that reads, ‘Someone depends on me. In an emergency please telephone...’ The number notifies the 24-hour emergency alert service, which will respond according to the instructions you leave on the enrolment form when you sign up.

The scheme is managed by Carers Support West Sussex and the card doubles up as a Carer’s Discount Card, see above.

Carers Health Team

This is a team of health professionals whose aim is to promote the health and wellbeing of carers. It is a free service provided by Sussex Community NHS Trust providing support for carers over the age of 18 registered with a West Sussex GP. The team works directly with carers and will develop individual strategies for each carer with an aim to reduce the strain of coping with their caring role. If necessary, they may also look at the health needs of the person who is being cared for. They work closely with other NHS specialist services, social and caring services, voluntary and community services and will link carers to them, as appropriate. Contact the team on: 01243 623521 or email: SC-TR.carerwellbeing@nhs.net.

Young Carers

Coping with a young person’s disability or additional needs can be difficult for siblings. They may have to take on household chores, or help with some care tasks and it can be emotionally draining living with people whose behaviour is challenging or whose disabilities are complex. Under The Care Act 2014, the needs of siblings needs can be assessed, and respite for them considered. When you speak to the Integrated Front Door, or Adults’ CarePoint if your disabled young person is over 18, ask for a ‘Young Carer’s Assessment’. Support for young carers can include:

- Regular breaks from caring so they can spend time with friends and enjoy the same opportunities as other children and young people of the same age.

- The chance to meet other young carers at local groups.

- Ensuring the young carer has support from other adults in their life and has someone to talk to when things are difficult.

- Supporting young carers during transition and significant life changes.

To access the service, call: 01903 270300, or email: youngcarers@westsussex.gov.uk or go to: www.westsussex.gov.uk/youngcarers.

Preparing for Adulthood

When our children are heading towards adulthood, we need to know that they will be supported to live as independent and fulfilling a life as possible and be appropriately cared for. But if your child needs a lot of support now it can be hard to find the headspace and time to think about the future. It is worthwhile if you can, though.

‘You know how it is, you deal with the short-term because the long-term is just so difficult to imagine.’

This section explains social care assessments for disabled adults and how they are carried out. It also covers the range of services that may be available and how those services are paid for.

Who gets support from adult social care?

‘I think you need some pointers; people will need to know they can ask certain things. I think the legal things are important to give parents the confidence… To know that you’ve got the basic right (in law) gives you the confidence to challenge things.’

Law reforms in 2014 brought about significant changes regarding special educational needs and social care provision for children and young people with SEND. Preparing for adulthood is a key element of these reforms and, for young people aged 18 to 25, there are two pieces of legislation that mean they may be entitled to support from adult social care.

The first is the Children and Families Act 2014, which introduced Education, Health and Care (EHC) Plans; a single assessment and planning process for young people with SEND which can potentially continue up to age 25, see here for more on EHC Plans. In addition to this, Part 1 of The Care Act 2014 deals with the care and support of people over the age of 18. Both the Children and Families Act and the Care Act share the following goals and themes:

- working towards clearly defined outcomes

- engagement and participation of parents and young people

- joint commissioning and developing a Local Offer of support

- coordinated assessments and Education, Health and Care Plans

- personalisation and personal budgets.

Not all young people who received social care support when they were young will qualify for adult services and having an EHC Plan does not necessarily mean that your young person will be entitled to social care support as an adult. However, it’s also important to highlight that some young people who may not have had support from social care in the past may need social care support in adulthood. This is why it is important to have an assessment done.

Moving to adult social care

Once your child is 18 years old, the social care support they need is provided through the council’s Adult Social Care Team. Adult social care workers carry out needs assessments to decide what the young person’s support needs are, whether the young person is eligible for support and, if they are, what support social care can offer you and your young person. In West Sussex enquiries are initially directed through the Adults’ CarePoint, see above.

If your child has an EHC Plan you should begin to discuss your child’s possible future needs for social care support during their Year 9 annual review as part of the process of transition planning. It is helpful to invite someone from social care to transition planning meetings, as they will decide whether your child is likely to need or get support from the local authority in the future.

If your child doesn’t have an EHC Plan but is getting social care support you should speak to your social worker about moving to adult social care.

‘Rachel’s transition from Children’s to Adult Services has been very smooth. I feel that the different agencies … have all communicated well between themselves, so bringing about a positive experience of transition. Throughout the process I always felt everyone involved worked with Rachel’s best interests at heart.’

Young people with lifelong disabilities

If your young person has a lifelong disability acquired before the age of 25 (for example a learning disability, autism, physical or sensory disability or acquired brain injury) you can contact the Lifelong Service, which works with adults who have a lifelong disability resulting in eligible social care needs. The service has:

- Three locality Lifelong Services Teams: Coastal, based in Durrington; Northern, based at Parkside Horsham; and Western, based at Durban House, Bognor.

- The Lifelong Services Transition Team, which supports young people transitioning to adulthood.

- The Lifelong Services Occupational Therapy Team (Children and Adults with a lifelong disability)

- The Sensory Services Team, which support adults with a sensory disability, (hearing or visual disability) acquired any age)

Referrals are taken from any source. To make an enquiry contact the Adults’ CarePoint, 01243 642121, or email: socialcare@westsussex.gov.uk.

Working together

A successful transition to adult care and support involves the young person, their families and professionals working together. The Care Act 2014 means local authorities have a legal responsibility to cooperate, and to ensure that everyone works together to get the transition right.

Child’s Need’s Assessments

Under The Care Act 2014, local authorities now have a duty to carry out a Child’s Needs Assessment (CNA) for a young person where there is ‘likely to be a need for care and support post-18’. The purpose of the assessment is to find out what adult social care a young person might be eligible for once they reach 18, so he or she can make informed choices about the future.

When does planning start?

Under The Care Act 2014, young people or their parents can request a Child’s Needs Assessment (CNA) at any time before their 18th birthday, whether or not they have an EHC Plan.

The CNA should be carried out at a time when it is of ‘significant benefit’ to the young person’s preparation for adulthood. It should include an ‘indicative personal budget’, so that young people are able to plan what their future support might look like. You can read more about personal budgets here.

If the local authority thinks your child will not need adult care social support, or they believe you are asking too early for a Child’s Needs Assessment (CNA) to be useful, they can refuse to carry out the assessment. If they do refuse, they must explain why in writing and include information and advice on what can be done to ensure the young person can avoid the need for care and support.

If the local authority does not carry out an assessment because the timing is not of ‘significant benefit’ they should advise you when the CNA should be carried out and contact you and your young person to arrange the assessment when that time comes.

For a young person with an EHC Plan, the conversation about whether they require a Needs Assessment should begin in the Year 9 review as part of the preparation for adulthood planning. If your young person does not have an EHC Plan, but is still supported by children’s social care, it is a good idea to ask their social worker at their next review when it will be useful to have the assessment done.

What should the Child’s Needs Assessment (CNA) include?

The assessment should be person-centred and it should give information about your child’s needs, plans and aspirations for their future. It should have clear short and medium term outcomes so that it can then be used as the basis for a conversation with: your young person; you; a professional from adults’ services (who should have good knowledge of support options that will be available to your child); and other professionals involved in the young person’s care and support.

Under the Children and Families Act 2014, EHC plans must clearly set out the care and support that is required as a result of the young person’s special educational needs. So if a young person is over 18 and they have a care and support plan, this should be incorporated into the EHC Plan, where there is one, rather than developed separately. It will include those elements of their care and support which are directly related to their SEND and specify other care and support. It should clearly highlight which elements are not directly related to SEN.

Eligibility and the Assessment Process

Since the Care Act came into force, it has changed the way the local authority decides if adults are eligible for care and support services. All three of the following must apply to your young person for them to be eligible for adult care or support services:

- your young person’s needs are due to a physical or mental impairment or illness

- your young person’s physical or mental impairment or illness affects their ability to achieve two or more ‘specified outcomes’ (see below)

- your young person’s wellbeing is significantly affected by the inability to achieve these outcomes.

Achieving ‘specified outcomes’

When considering whether someone is eligible for adult care and support services, the assessor will look at ‘outcomes’. This means they look at the impact of your young person’s physical or mental impairment on their daily life. They will look at strengths and capabilities and identify support that may be available in the local community to help your young person be as independent as possible. They will ask you about:

- managing and maintaining food and drink

- managing personal care – making sure they are clean and dressed appropriately

- managing toilet needs

- getting around the home safely

- looking after the home

- developing and maintaining personal relationships

- being able to access and take part in work, training, education or volunteering

- using services in the local community, such as public transport and leisure facilities

- carrying out caring responsibilities

The local authority may measure your young person’s needs against other ‘outcomes’ too – so ask what these might be. They also look at their care and support needs over the last year to consider whether your young person’s needs may change.

The local authority must carry out a needs assessment for people who appear to be in need of care and support, regardless of their financial status or whether the local authority think that their needs will not be eligible. To arrange a needs assessment if your young person is already 18 or, if they are under 18, a Child’s Needs Assessment (CNA), contact the Adults’ CarePoint and request an ‘Assessment of Needs’.

The assessment process

During the assessment, a social care worker will gather information from your young person, their parent carers and relevant workers from education, health and social care. Assessments are usually done in your home and may take more than one visit.

The social care worker doing the assessment should note down what is said during the meeting. This should include the services your young person needs and also anything that you disagree with.

It is important to involve the young person as much as possible during the assessment process. They may need specialist support to help them communicate their thoughts and feelings – for more on helping your child to communicate effectively in meetings, see here.

What happens after the assessment?

If your young person is eligible for services or support, you should get a written record of the assessment, which may called a ‘support plan’.

The plan will outline the young person’s and carer’s needs and the support that is required, then social care will work out how much funding is available to help you with this.

If your young person is eligible for support, they will be allocated an approximate sum of money called a ‘personal budget’ to cover the cost of their care – read more about personal budgets here.

If your child isn’t eligible, you should get a written statement telling you why. Even when an assessment says that someone does not have needs that the local authority should meet, the local authority must advise people about what needs they do have and how to meet them, as well as advising on how to prevent further needs developing.

Assessment tips

- Don’t assume because your child has an EHC Plan that they will be eligible for adult services.

- Get as much information as you can from other people in similar situations – including information about services, waiting times for assessments and recent examples of provision.

- If you feel that you or your young person needs someone to support them with the assessment, you could ask for an independent advocate to help you. You can find out more about advocacy options in West Sussex by going to www.westsussexconnecttosupport.org or contact the Adults’ CarePoint.

- Don’t be afraid to ask questions and explore different options. When you are speaking to professionals, make sure you note down their name, job title and contact details, in case you need to go back to them.

- Don’t be afraid to suggest things that haven’t been tried before. If you can explain why your idea may work others may be willing to listen.

- Don’t see professionals as the ‘opposition’. Try to explain yourself clearly, and to see their point of view. If you don’t agree, say so politely and explain why.

- Ask what the next steps are and when they will happen.

Ensuring there is no gap in services

When the local authority assesses a child who is receiving support under legislation relating to children’s services, The Care Act 2014 requires them to continue providing him or her with that support through the adult assessment process. This will continue until adult care and support is in place to take over, or until it is clear after the assessment that adult care and support does not need to be provided. These changes are meant to prevent someone who is already receiving support suddenly finding themselves without the care and support they need when they reach 18.

Your young person’s support plan

After the assessment, if your young person is considered eligible for support, someone from adult social care will help you put together a care and support plan. The support plan will confirm which of your young person’s needs are to be met and how this will be done. The plan should be reviewed on an annual basis.

The person from social care will be responsible for making sure that any agreed services are put into place. However, be aware that there can be delays between finalising the plan and putting it into action. The support your young person receives will depend upon their individual situation but may include:

- equipment to help them stay independent

- technology to keep them safe in their home

- help looking after themselves at home

- help with going out

- help getting a job or studying

- access to supported living or other housing support

The care and support could come from a variety of places including: family and friends, the NHS, West Sussex County Council or community and voluntary organisations.

How a support plan works

Your social worker will discuss how your young person’s needs can be met with you and your young person (if appropriate). They should ask you what you want to happen and what is important to your young person. This is meant to give you and your child the chance to take control in deciding how they will receive support, and to have a clear idea of when and how this support will be provided. The support plan will also look at how to improve the young person’s wellbeing and prevent problems developing in the future.

You will be given a copy of your young person’s support plan, which will include details of any decisions taken. You can ask to see personal information held by Adult Social Care about you and your young person. If you feel anything is incorrect you can ask staff to change this.

If you, another family member or a friend is providing your young person with support on a regular basis, the support plan should also provide details of how your young person’s needs can be met if you or the other carers are not available.

Things to remember

When you get a copy of your child’s support plan, double check that all their needs have been taken into account. Once a support package has been agreed, it’s hard to renegotiate once support has been provided, it can’t be taken away without the person’s needs being reassessed.

If the support plan isn’t being monitored properly, contact the Adults’ CarePoint and request a review date.

‘I was very impressed when I saw Rachel’s support plan, it was accurate and thorough. The social worker made great efforts to ensure that I was completely happy with it.’

Keeping the support plan up to date

Completing the planning process and putting care and support arrangements in place does not mean the end of the local authority’s responsibilities. The local authority has a legal duty to review the plan to make sure that the person’s needs and outcomes continue to be met over time, although the Care Act does not specify how often this has to happen. But if anything has changed, a new assessment must be carried out, so it is important to let the local authority know about any changes as quickly as possible. Your young person also has a right to request a review of their care and support plan, if they wish.

What if you disagree with the assessment findings and support plan?

If you don’t agree with the findings of the assessment, contact the Adults’ CarePoint to discuss the matter. The support plan could be changed by agreement. You have the right to ask for a review of the assessment, and to ask someone to advise you or act on your behalf. If you or your young person needs support to do this they could ask for help from one of the advocacy services in West Sussex.

If you still disagree with the assessment, or with how social care intends to meet your child’s needs, you can go through a formal complaints procedure.

What if your young person’s support plan isn’t working?

From time to time things may go wrong with your young person’s care. Your social care worker should have already discussed with you and your young person what should happen if a crisis occurs and this should be included in their support plan.

If there is a problem with the way your young person’s care is being provided, you should first speak directly to their care provider. If this doesn’t resolve the problem, then call the Adults’ CarePoint.

‘When I saw Charlotte’s support plan there was nothing in it about night waking staff even though she has epilepsy and could fit at night. I flagged this up with Charlotte’s care home manager. They had to go back to the council to give them more funding to do this. There was a lot of resistance to this, because the council had already agreed a package that seemed expensive.’

How is adult care and support funded?

The Care Act 2014 gives local authorities the power to charge people for social care services. This includes services such as residential care homes, short breaks, day services, home care, community support, and home adaptations.

Depending on your young person’s financial situation they may be asked to pay towards the cost of their support, which the Local Authority will help to arrange. This might come as a surprise, but be aware that very few people have to pay the full cost of their care. The amount payable will be based on an assessment of the young person’s income and not your family income as a whole. Your young person is entitled to financial support from the Local Authority if one of the following applies:

- the type of care and support your child needs is already provided free of charge

- your young person can’t afford to pay for the full cost of their care

- your young person asks the council to meet their needs

- your young person does not have the mental capacity and has no-one else to arrange care for them – for more on mental capacity see here.

Financial assessments

A financial assessment is carried out alongside your young person’s needs assessment. The assessment will work out how much the young person will have to pay towards a service and how much the council will pay. It takes into account the young person’s financial position and is also used to check whether they are getting the correct state benefits. The mobility component of DLA (Disability Living Allowance) or PIP if your young person is over 16, should not be taken into account when the young person’s income is assessed.

If the service is for your young person, your own finances should not be taken into account. Young people should not have to pay for services if they are receiving a service under Section 117 of the Mental Health Act 1983. If your young person’s assessment shows they are eligible for funding for social care, they may be allocated a Personal Budget, which is the amount of money the local authority has decided is necessary to arrange your child’s care and support. A Personal Budget can be allocated to you directly as a Direct Payment so that you can organise and pay for things like short breaks yourself. If you prefer, the local authority can hold onto the money and arrange support on your child’s behalf. Or you can have a mixture of both. You can find out more about Personal Budgets and Direct Payments in our Money Matters chapter.

If there is a dispute about charges, the service must remain in place while the issue is resolved.

What support is available to over 18s?

Cuts to funding from central government to local authorities have meant that the council has had to make huge savings and adult social care budgets are affected by this. Although many services are not provided directly by adult social care, as they are commissioned or contracted out to independent organisations, the first point of contact for all the services we describe is still the Adults’ CarePoint call 01243 642121, or email socialcare@westsussex.gov.uk for more information.

You can find out about adult social care support provided in West Sussex on the Connect to Support website at: www.westsussexconnecttosupport.org. It also has advice for carers as well as information about support groups, voluntary organisations, charities and more. The Local Offer also contains information about all sorts of local services including health and social care.

The following list provides a summary of the types of support your young person may be able to use if they’re assessed as needing them. Remember, providers can change and new services frequently become available for purchase. In all cases, your young person will need an assessment of needs before they can access these services. If your young person has a social worker, talk to them, or call the Adults’ CarePoint on 01243 642121 for more information.

Day activities

The term ‘day activities’ covers a range of provision. For example, a young person may have a package of daytime activities that includes attendance at a day centre, working in paid or voluntary jobs supported by social care’s Supported Employment Team, and doing a college course.

Day centres usually include a range of activities and are used by different age groups. They may provide a hot meal at lunchtime and transport is frequently arranged, although a charge may be made. There are no day centres catering specifically for young people.

The following list is correct at the time of going to press, although please bear in mind that some services may be operating differently due to Covid-19 restrictions. We recommend that you check the websites posted below to see what’s available in your area as these could be subject to change. For entries marked (*) your young person will need a social care assessment to access the service.

- 4Sight clubs and specialist groups offer social opportunities for people with sight loss. For more, go to: www.4sight.org.uk/clubs

- The Aldingbourne Trust runs a number of support services, drop-ins, activities and clubs. For more, go to: www.aldingbournetrust.co.uk.

- The Apuldram Centre, Chichester, has a day centre that enables working age adults with learning disabilities to take part in a wide range of occupationally focused and enterprising activities such as: horticulture, woodwork, cookery, arts and crafts. It also runs ‘hub club’ with various activities. See: www.apuldram.org/hub.

- *Burnside Day Services, Burgess Hill. Offer activities linked to training, work, independent living and leisure opportunities. Go to www.westsussexconnecttosupport.org and search for ‘day centres.’

- Chailey Heritage Foundation runs The Hub, which offers day provision to young adults aged 16+ with disabilities including physical and complex health needs. It offers the chance to develop life skills, develop a peer group and to live life to the fullest. Young people can access the Leisure and Skills Centre, which offers art, cooking, drama, and other multimedia and sensory activities. There is also a fully accessible gym, spa, and hydrotherapy pool. For more, go to: www.chf.org.uk/futures-hub.html.

- *Chestnuts Day Centre, Bognor, *Glebelands Day Centre, Shoreham and *The Laurels Day Centre, Rustington are for people with dementia and or longer term/ complex social care needs. The centres are mainly used by older adults, but take younger people if they can meet their needs. Activities include arts and crafts, cooking, music and games. For more go to www.westsussex.gov.uk and search for ‘day centres.’

- *Coastal Enterprises, Worthing is a day service for adults with learning disabilities that offers sessions in health and wellbeing, education and creative skills. Go to www.westsussexconnecttosupport.org and search for ‘day centres.’

- *Coastal Workshop, Rustington is a work-based day service for adults with learning disabilities that also provides sessions on health and wellbeing and life skills, as well as offering 1:1 or group support with literacy and numeracy. Go to www.westsussexconnecttosupport.org and search for ‘day centres.’

- Guild Care has two centres for adults with learning disabilities in Worthing: Birkdale and The Fitzalan Howard Centre. For more information go to: www.guildcare.org/Pages/Category/services-for-adults-with-disabilities.

- Millstone Day Centre, Sayers Common offers day services for those aged 18+ with autism, learning disabilities, mental health issues and the elderly. Sessions offer activities such as cooking, IT skills, coffee mornings, arts and crafts. Go to: https://independentlifestyles.co.uk.

- My Network and *My Network Plus is an intiative run by Network West Sussex. It aims to support young people with lifelong disabilities to live as independently as possible. My Network is a drop-in service offering advice and support to help people aged over 16 with disabilities live as independently as is possible. My Network+ is a referral only service for people over 18 with a lifelong disability who have a tenancy but do not have a Personal Budget and have had an assessment that shows their care and support needs can be met through the service. My Network is an information, advice and guidance service to help adults with learning disabilities and/or autism who are not eligible for social care to increase their wellbeing and independence. reach their full potential with tailored support. The project is delivered by Aldingbourne Trust (Bognor, Chichester, Midhurst), Outreach 3 Way (Crawley, East Grinsted, Horsham), Signposts (Burgess Hill, Haywards Heath) and Worthing Mencap (Littlehampton, Shoreham, Worthing). For venues and contact details see: www.aldingbournetrust.org/support-in-the-community.html.

- *Oak Community Project supports adults with learning disabilities via a range of activities to promote independence and wellbeing including work placements, life skills, physical and educational activities. Go to www.westsussexconnecttosupport.org and search for ‘day centres.’

- Outreach 3 Way supports people with learning disabilities and autism. It runs a number of classes every week and also has a day centre in Ifield, which runs groups and workshops, tel: 0300 303 9032 or email: Hello@outreach3way.org.

- *The Pines, Worthing, is for adults with learning disabilities. They can support young people from local schools and colleges who are transitioning to adult services so they can spend time in the centre before they start. Activities include life skills, drama, dance and singing. Go to www.westsussexconnecttosupport.org and search for ‘day centres.’

- *The Point, Chichester is a day centre for adults with severre physical disabilities that provides opportunities to develop life skills and independence. Go to: https://thepoint-chichester.org.

- *The Rowans, Worthing is a specialised service for people with an acquired brain injury and/or physical disabilities and complex needs. A variety of activities are run including quizzes, IT skills, cooking, drawing and support to relearn skills.

- *The Strawford Centre, Horsham supports adults with learning disabilities to develop their independence and life skills, including travel training, road safety awareness, your community and money skills. Go to www.westsussexconnecttosupport.org and search for ‘day centres.’

Tips for choosing day activities

- Ask your social worker for a list of day activities and where they take place.

- Arrange to see different activities and centres yourself. Ask how they could help meet the needs of your child. It’s important to get an idea of what’s available and whether you think your child would be happy there.

- Make sure that your young person also gets the chance to see the activities and look round the centres, too.

Short breaks or respite

Short breaks or respite care aims to give families who care for a family member some time out from caring. There are no rules about where short breaks take place, but it’s usually provided at other people’s homes, residential homes, or by people coming into your home or taking the young person out.

The Aldingbourne Trust has a service called ‘Support Workers Direct’ which matches the right carers with the families and individuals they support. The service offers personalised care packages at home, in the community and respite support. For more information go to: www.aldingbournetrust.co.uk, call 07985 517035 or email: juliew@aldingbourne.org.

Outreach 3 Way provides short breaks and respite to people aged 18+ with learning disabilities and/or autism. For more information go to: https://dimensions-uk.org/service-detail/queens-lodge-west-sussex and fill in the enquiry form. To access this support, your young person will have to be eligible for adult social care support and have had an assessment of their needs.

Tu Vida offers daytime and evening care in your own home, either temporarily or regularly, as well as emergency respite care. For more, go to: www.tuvida.org/carer-respite-west-sussex.

You can also arrange your own support, through an Individual or Personal Budget or Direct Payments.

Home care services

Home care services provide personal care for people in their own homes. Home care used to be called home help and in those days included help with housework.

Now, home care services help only with personal care such as washing and bathing, getting up and dressed or getting ready for bed. Adult social care has a small ‘in-house’ care service, but most care needs are mostly provided by private agencies, all of whom are registered with the Care Quality Commission. You can read more about the services available on West Sussex Connect to Support: www.westsussexconnecttosupport.org.

Personal Assistants (PAs)

Some people assessed as needing home care services choose to get Direct Payments so they can employ their own Personal Assistant (PA). A Personal Assistant is someone who provides support with every day activities such as shopping, leisure activities, washing and personal care.

In West Sussex, Independent Lives has a website with advice on employing a PA. You can advertise for a PA on their vacancies board, or use their online database of PAs to find the right person for you. They can also offer a payroll service if you are employing a PA and need some help with this. For more information go to: www.independentlives.org or call 01903 219482.

Shared Lives Carers

Shared Lives is a scheme that links up adults with learning and/or physical disabilities with carers who provide support and accommodation in the carers’ own home. Carers are paid, trained and supported by the council and support can be either on a full-time or short breaks basis.

Equipment and housing adaptations

Whether your young person still lives at home, in private rented accommodation or social housing, the Local Authority may be able to help them to live more independently by providing equipment or adaptations to the home that make daily life a bit easier.

Adaptations might include providing ramp access, adding handrails, widening doors, raising electrical sockets, replacing a bath with a level access shower, or equipment for people with hearing or visual difficulties. These adaptations might be part or fully funded by the Local Authority, depending on your young person’s circumstances.

Your young person will need to be assessed by an Occupational Therapist (OT) from adult social care to see if they are eligible for adaptations. To find out more, call the Adults’ CarePoint on: 01243 642121, or email: socialcare@westsussex.gov.uk.

Much of the advice regarding equipment for under 18s is also relevant for adults, so do have a look at the Adaptions to your home section for information on the Community Equipment Service, Wheelchair and Seating Service and other national organisations that can help.

When things go wrong

What do you do if you’re not happy with decisions made by children’s or adult social care or the support your young person receives?

What the law says

By law, social care departments must have a complaints procedure and a complaints officer. Social care services must be able to give you information about how to make a complaint, where you can get help to make one, and how quickly the complaint will be dealt with.

Anybody who receives support from social care services can make a complaint about a service they get or one that they feel has been unfairly refused. The complaint can be raised by the young person, or by a family member such as yourself, or a friend. If your young person has the mental capacity to give their consent they must give permission for you to complain on their behalf.

You can also use the Local Authority’s complaints procedure if you are unhappy with the assessment – for example, if:

- the local authority refuses to assess you

- you have been waiting too long for an assessment

- you are not happy with how the assessment was done

- you feel your child is not getting the services they need

- you are being asked to pay too much for the services

- you have problems with the services being provided.

How to complain

To make a complaint, it is best to start by speaking to your contact from the Integrated Front Door for under 18s, or the Adults’ CarePoint for over 18s. You can also make a complaint through the local authority’s customer relations team by calling: 01243 777100 or by filling in the online form on the website by going to www.westsussex.gov.uk and searching for ‘complaints.’

You can also speak to Healthwatch about any issues you are having.

If you’re not happy with the outcome of your complaint, you can consider taking the matter further by raising it with the Local Government and Social Care Ombudsman (LGO). Call them on 0300 061 0614 or fill in their online contact form. You can visit their website for more information about how they might help at: www.lgo.org.uk.

Local authorities must have a ‘monitoring officer’ (someone who makes sure the council is doing what the law says it must do). So if you think it has broken the law (for example, if it won’t pay for residential care when you think the law says it should), you can ask the monitoring officer to look at your case. Your local councillor or MP may also be able to help. If these steps don’t sort out your problem, you can take your case to the Secretary of State for Health – but you’ll need legal advice before you do this.

Another possibility is to use (or threaten to use) the courts, either to sue the Local Authority for a ‘breach of its legal duty’ (though this can be difficult to prove), or to get a judge to rule on whether the council’s actions were legal, rational and reasonable in a process called ‘judicial review.’

Again you’ll need legal advice. If you can’t afford to pay for a solicitor, and you meet other conditions, you may be able to get public funding (Legal Aid) to help pay for legal expenses. The Disability Law Service offers free legal advice and a casework service for disabled people. Visit www.dls.org.uk to find out more or ring 0207 791 9800.

This may all sound very daunting but don’t be put off making a complaint if you have genuine concerns, as many problems can be resolved in the early stages without having to resort to taking the more serious steps outlined above.

Section two: Finding your way

Money matters

When children have SEND, it can be tricky to anticipate how much extra help they will need and how much it will cost, but for many families there will be additional expenses, which soon add up.

Some of the things that you may have to find money for include: travel expenses to and from hospital, parking costs if you drive, additional loads of laundry, and special diets. Some parents also find they are unable to return to work, due to the high level of care that their child needs.

All these things can be a strain on the pocket, but many families are entitled to extra benefits or other financial help, which can make all the difference.

This chapter focuses on the main disability benefits and sources of financial help for parents who have a child with SEND. It also includes information on grants, which are available from both the government and charitable sources, and other additional benefits available to families on low incomes.

What is Disability Living Allowance (DLA)?

Disability Living Allowance (DLA) is a benefit for children under 16. It is often the first benefit that parents claim and it’s also a ‘passport’ to other sorts of financial help. This means that if your child gets DLA you may be entitled to other benefits, too.

DLA is paid every four weeks. It isn’t taxed or means-tested, so your other income isn’t taken into account when an assessor is deciding whether you meet the criteria to be awarded DLA. You can claim DLA if your child needs more help or looking after than other children their age because of their SEND.

If you are considering claiming DLA it can be useful to note down all the ways in which you have helped your child day and night over the past few weeks. This will help you to answer the questions on the application form.

When you think about it in this way, you may be surprised how much extra help you give your child. Many of us underestimate just how much time and effort we put in, as after a while it becomes our everyday life. We forget about all the careful planning and adjustments we make, even for something as simple as popping to the shops for a few essentials.

What counts as help?

Lots of things count as help. Examples include things such as the need to teach your child skills that other children pick up naturally, to always being ‘on duty’ because your child needs close supervision, or the difficulties that something as straightforward as a trip to the supermarket may bring.

Many of our children need help to be understood, make sense of what’s going on around them, or to manage difficult feelings. Some children need ‘hands on’ help with everyday activities like dressing, washing, toileting, learning to play, or get on with other children. Your child may need you to monitor a medical condition, give medication, help using special equipment, or to carry out a therapy programme. Or perhaps your child needs your help to get out and about, or needs you to keep an eye on them to stay safe.

Some children need much more help than others of the same age. But even if your child needs extra help with just some things, it is worth applying.

How can I get the forms?

You can apply online, or download the DLA application form at: www.gov.uk/disability-living-allowance-children.

Do be aware, however, that the form is very long, so it can be costly and time-consuming to print, so you may wish to ask for a paper copy to be sent to you. You can do so by calling: 0800 121 4600, or textphone: 0800 121 4523 (Mon-Fri, 8 a.m. to 5.00 p.m.)

Another advantage of requesting the form by phone is that it will be date stamped and, as long as you return it before the deadline, DLA will start from the date on the form if an award is made.

When you call, be clear you are claiming for a child and not yourself. Tell them your child’s age, so that you are sent the right claim pack. The application form you need, DLA1A, is different to the one for adults. If your child is nearly 16, you will be asked to fill in an application for Personal Independence Payment (PIP) instead.

If your claim is successful, DLA is payable in two parts – care and mobility components. You can claim either or both and there are rules about what you can claim.

The care component

You can claim this if your child needs help with ‘personal care’, that is, looking after themselves and this includes things like keeping safe and communication. You can claim this part of the benefit at any time, as long as your child has needed the extra help for at least three months and will continue to need that help for at least another six months. There are three rates at which it is paid:

- Lower rate: if your child needs some help during the day.

- Middle rate: if your child needs more help during the day or at night. This might be frequent attention throughout the day, if your child has speech and language needs for example, or almost constant supervision if your child has behavioural difficulties or health issues. Or if your child needs help for a significant part of the night but doesn’t need help during the day.

- High rate: if your child needs substantially more help day and night than a child of the same age without a disability.

The mobility component

You can claim this part of the benefit if your child needs extra help getting around. There are two rates for this:

- Lower rate (payable from age 5): if your child needs someone around to keep them safe or someone to help them find their way around. To get this you will need to show how much more help your child needs than other children of the same age. Most children awarded the lower rate mobility component are likely to have a significant learning or co-ordination difficulty, a communication disorder or some sensory impairment.

- Higher rate (payable from age 3): if your child’s ability to get around is severely restricted by their disability. It is payable to children who are unable to walk independently. Children meeting this rule are likely to have a severe physical or sensory impairment, a life-threatening neurological, cardiac or respiratory disorder. You may also be able to claim the higher rate if your child has a severe impairment of cognitive and social functioning, for example severe autism and learning disability. If this is the case, you may find it useful to refer to Contact’s guide for claiming the higher rate mobility component for children with learning difficulties and autistic spectrum disorders. Go to https://contact.org.uk, or request a copy via their helpline: 0808 808 3555. You will need to show that your child’s behaviour is so unpredictable, disruptive and extreme that they regularly require someone to physically intervene to prevent self-injury, injury to others or damage to property. You will need supporting evidence. To claim on these grounds your child will already need to be getting the high rate of the care component.

If your child is coming up to three years old and already receives the care component of DLA at the higher rate, you should be contacted and asked if you wish to make a claim for the mobility component.

More about the higher rate mobility component

If your child is awarded the higher rate of the mobility component you might get an exemption from paying vehicle tax on the car that they use. Ask the disability benefits unit dealing with your child’s DLA claim for a Vehicle Excise Duty (VED) exemption form (INS216). With this you can apply for a certificate of exemption from the DVLA, which proves you do not have to pay tax.

Technically, the car is only exempt while it is being used solely by or for the purposes of your disabled child. However, your child does not have to be in the car every time it is used. As long as they use the vehicle ‘substantially’ this is perfectly acceptable.

Making a DLA claim

For both the care and mobility parts of DLA, you have to show that your child’s needs for care or supervision are ‘substantially in excess’ of the needs of other children the same age who do not have an illness or disability. It’s a good idea to send supporting information from professionals working with your child, because whatever you say needs to be backed up.

The forms are long and detailed and it’s worth getting help to fill them in. Other parents who have claimed DLA and have children with similar needs can be a great source of information about what to say and what not to say.

‘It’s daunting and you need someone who knows what they are doing to help you.’

Tips

- Allow at least five to six hours to fill in the pack and give it a high priority. Awards are made for two to three years at a time and can really help your family to manage the additional expenses, so it’s worth spending time on the form to get it right.

- There are two ways to fill the form in. You can either download an electronic copy, which you can fill in on your computer. This is quite a useful way of doing it, as you can save your progress and go back to it to make changes or add things as you remember them. If you do fill it in electronically, note that you still need to print it off so you can sign it. Alternatively, you can print off a copy, or ask for a form to be sent to you, and fill it in by hand. If you do request a form to be sent to you, it will include a freepost envelope, which can be useful if you are sending lots of supporting evidence.

- If you fill it in by hand, try to keep your writing legible, but don’t worry too much about spelling or writing in complete sentences. If you make a mistake, cross it out rather than using correction fluid.

- Look at all the most recent reports you have about your child and read them through. They can often help you to summarise your child’s needs and explain them on the form.

- Tick boxes on every page, but don’t fill in pages that aren’t relevant. Fill the box if you have lots to say, and if you run out of space continue on additional sheets of paper. Make sure that you write your child’s name and date of birth on any extra sheets.

- Don’t underestimate the help your child needs; consider the extra of assistance they need compared with other children of the same age, as this is how they will be assessed.

‘It’s hard doing the form. It made me focus on all the things Henry can’t do. But I needed to be realistic and honest about all the challenges we face, to get the help we need.’

- As you fill in each page, describe what happens at mealtimes, bathtime, bedtime, at the shops, on public transport and so on. Say exactly what help or supervision you give. Say what would happen if your child didn’t get this help.

- It can help to give examples of how a child of the same age, or sibling of a similar age, who do not have SEND would cope in the same situation. Would they manage the same task without the support your child needs? Perhaps they are able to do this task independently.

- It is also helpful to include examples of what happened when your child did not get help, or did not have the right level of support, as this can help the assessor to fully understand the challenges you and your child face.

- Don’t forget about glasses, hearing aids and other important pieces of equipment. They can be costly to repair, or replace. If your child routinely breaks or loses these items, make sure you say so on the form.

- Write about the bad days, even if some of what you say feels very hard to share. On the other hand don’t waste space detailing how amazingly talented your child is at drawing. The claim assessor wants to know what the difficulties are, so this should be what you focus on!

- Remember, the claim needs to be strong enough to convince someone who has never met your child. Read it back to yourself. Is there anything you haven’t said? What you read may seem repetitive, don’t worry, it’s meant to be. The Department for Work and Pensions (DWP) will be looking for common threads running through your claim.

How others can support your DLA claim

The DWP will also want evidence from other people who know your child, so be prepared. Check that all professionals whose details you include know you are claiming as the DWP may contact them. GPs are very often contacted but may not know as much about your child as consultants, so it may be worth making an appointment to put them in the picture. The DWP will usually contact your child’s school, too.

Get a supporting statement from a professional who really knows your child well. Whoever you choose must say how much more care or supervision your child needs and why. It’s not enough just to give a diagnosis, every disability impacts differently on individual children. If the professional has only seen your child in a clinic or at school, make sure they don’t have to guess how things are at home; ask them to read what you have written, or give them a summary of the main points you would like them to include in their statement.

Getting supporting advice for problems at night can be difficult, so keep a diary for a week or two. Show it to your GP or your child’s teacher and include it with the claim. It helps if others are able to say that you report broken nights. So if you have asked your GP for help with tiredness or your child’s disturbed nights, or if your child falls asleep or is irritable at school and their teacher can link this to your reports of broken sleep, ask them to include this in their advice.

Don’t rely on a professional to fill in their part and send it off, as it’s unlikely to be given top priority. Ask for it back by a particular date and make an effort to drop it off and pick it up yourself. Don’t trust the post; this is your only copy and you’ve invested a lot of time on it.

If at all possible, send supplementary evidence that supports what you are saying. So for example you could include copies of medical reports, speech and language assessments, psychological advices and your child’s EHC Plan or details of the SEN Support plan the school has put in place as they help to build a picture of your child. However, do remember that the DWP will not return these reports, so always ensure that you send photocopies rather than original documents.

You should also make a copy of everything else you send, especially if you have filled the out by hand, so that you have a record of what was written. Keep the copies in a safe place; you will need to refer to them if you want a decision looked at again and when the claim is reviewed or if the original gets lost in the post.

To make sure that your claim arrives safely, consider sending paperwork by special delivery. Doing this is expensive but it’s worth the peace of mind. You get a receipt, the claim can be tracked, and the DWP has to sign to say they’ve received it. If you hand a claim into a Jobcentre Plus, ask for a receipt.

Getting support with DLA forms

At the time of writing, Reaching Families is working on a new benefits advice service for parents, carers and families of children and young people with SEND, which will launch in 2022. For more, see Benefits Advice, Essential Contacts.

We have produced a number of fact sheets on DLA, which can be downloaded from our website: www.reachingfamilies.org.uk/factsheets.html. Many other disability organisations offer useful advice about claiming DLA for children and young people with specific illnesses or disabilities, including:

- Cerebra: https://cerebra.org.uk/download/disability-living-allowance-dla-guide

- Citizen’s Advice can offer support to fill in DLA forms, see Local Directory for contact information.

- Contact: go to their website (https://contact.org.uk) and search for ‘Tips on completing the Disability Living Allowance form.’

- Down’s Syndrome Association: go to: www.downs-syndrome.org.uk/about-downs-syndrome/lifes-journey/benefits-finance

- Scope: www.scope.org.uk/advice-and-support/disability-living-allowance-dla.

Many of us find filling in the DLA form a rather depressing experience, because you have to concentrate on what our child can’t do rather than what they can. So when you’ve finished, make sure you spend some time focusing on the positives: enjoy the things your child can do and celebrate their successes.

What to do if your DLA claim is unsuccessful

If your application for DLA is turned down, don’t give up. You can request a ‘Mandatory Reconsideration’, which must be made within a month of the date on the decision letter. You must have this done before you can proceed to an appeal and you will need to include a copy of the Mandatory Reconsideration with the appeal.

If you think you should be paid DLA at a higher rate than the one offered, you also have the right to ask for a review. This sort of review is called a ‘revision’. You can also ask for a review if your child is receiving the benefit at a lower rate and his or her condition alters and they need more help. Where a decision was correct at the time but circumstances have changed, the review is called a ‘supercession’.

It’s important to seek advice before asking for a decision to be looked at again. If you are unsuccessful, you can still appeal to an independent tribunal. If you don’t want to attend in person, you can submit an appeal in writing, or send a representative to act on your child’s behalf. However, it is worth attending if you can, as paper appeals tend to be less successful than those made in person. The form you need to appeal is called SSCS1 notice of appeal, which can be downloaded from: www.gov.uk. Alternatively, call the DWP on: 0800 121 4600 to ask for a hard copy to be sent to you.

There are time limits for reviews and appeals, so always get advice as quickly as possible. If you are on a very low income your local Citizens Advice centre may be able to help you with an appeal. You can also refer to our fact sheet on Reconsiderations and Appeals, which can be downloaded from our website: www.reachingfamilies.org.uk/factsheets.html.

Can I apply for a Blue Badge for my child?

A Blue Badge allows the holder to park in disabled bays. In England, you automatically qualify for a Blue Badge if any of the following apply:

- your child receives the higher rate mobility component of Disability Living Allowance (DLA)

- your child is registered blind

- your young person scores eight points or more under the ‘moving around’ activity of Personal Independence Payment (PIP)

- your young person scores ten points under the ‘planning and following a journey’ activity of Personal Independence Payment, because they are ‘unable to undertake any journey because it would cause overwhelming psychological distress to the claimant.’ You must score 10 points specifically for this reason.

The Blue Badge is also available to families with children under two who, because of their medical condition, need to travel with bulky medical equipment or be close to a vehicle for emergency medical treatment.

In 2019, the criteria for those who may qualify for a Blue Badge was extended to include people with ‘hidden’ disabilities, such as autism and learning disabilities who:

- cannot undertake a journey without there being a risk of serious harm to their health or safety, or that of any other person

- cannot undertake a journey without it causing them considerable psychological distress

- have very considerable difficulty when walking (both the physical act and experience of walking).

For children and young people who don’t automatically qualify, it can still be worth applying as the local authority will assess their eligibility based on your application form and evidence from health and social care professionals who are involved with your child’s care. In these circumstances it can be very helpful to ask your child’s consultant to write a letter in support of your application.

Sticking to the Blue Badge rules

If you display the badge back to front, or with the expiry date hidden you are likely to get a parking ticket. Most importantly, if your child is not in the car, it is an offence to display the badge unless you are on your way to pick up your child, or you have just dropped them off.

You can get a Blue Badge application form by calling: 01243 777653, or by downloading a copy at: www.westsussex.gov.uk/bluebadge.

You can also use the mobility component of your child’s DLA to lease or buy a car or a wheelchair, under the Motability Scheme.

Carer’s Allowance (CA)

Carer’s Allowance (CA) is a weekly payment for anyone who spends at least 35 hours a week looking after someone with an illness or disability, but isn’t paid to do it. The person they look after must be getting the middle or higher rate of DLA or either rate of the daily living component of PIP. If someone other than you cares for your child, they can claim the benefit instead. Even if your child is at school or college, many parents will ‘clock up’ more than the required 35 hours a week. Only one person can claim CA for your child and you can only claim CA once, even if you care for more than one person who’s getting DLA or PIP.

You can claim CA and earn up to £128 a week after deductions (tax, National Insurance and other allowable deductions). This amount is revised every April and is correct for the year 2021/22. Up to half your earnings can be disregarded if you pay someone who’s not a ‘close relative’ to look after your child. You can claim CA even if you are getting DLA, PIP or Attendance Allowance yourself. CA is taxed and counted as income if you claim other means-tested benefits.

It’s worth claiming CA even if you are on means-tested benefits because although CA is deducted from them, claiming it protects your pension and makes you eligible for a Carer’s Premium, so the amount of means-tested benefits you get will increase.

How do I claim Carer’s Allowance?

The process for claiming CA is simple and quick. You can fill in a claim online at: www.gov.uk/carers-allowance or download a form to print out and fill in by hand.

You can make a claim when you apply for DLA and, as long as you meet the qualifying criteria, CA will be paid as soon as an award for DLA is made. Claims can be backdated up to three months, so you can wait and make a claim for CA once your child’s award for DLA is agreed.

If your child’s claim for DLA is turned down, or they are only awarded the low rate of the care component, apply for CA as soon as you can, while you challenge that decision. This ensures that your backdated CA is safe if the decision is revised.

Universal Credit

For the past few years, changes to the benefit system have meant that many familiar benefits have been replaced by Universal Credit. This is an integrated means-tested benefit for people in or out of work.

There is still some way to go until all benefits claimants have been moved on to Universal Credit, although it has been rolled out in West Sussex for new claimants and also for anyone who notifies the DWP of a change in circumstances. The government plans to move all claimants over to Universal Credit some time by 2024. Universal Credit replaces the following benefits, which are now known as ‘legacy benefits’:

- Child Tax Credits

- Employment and Support Allowance (ESA)

- Housing Benefit

- Income Support

- Job Seeker’s Allowance (JSA)

- Working Tax Credits

Instead of claiming these different benefits, people will receive one single Universal Credit payment, which is made up of different elements, such as a child element for people with three children or fewer, work allowances, housing costs, childcare costs and an additional element if your child or young person has a disability.

For parent carers, there are some downsides to Universal Credit. The lower rate of the child disability addition is less than half the amount parents could claim under the old system, so for those whose children receive DLA, but don’t qualify for higher rate care, the amount of benefits you will receive will fall. There are also stricter rules for carers, who may be asked to look for work, depending on their individual circumstances. As a result, we would strongly recommend that families seek specialist advice before agreeing to move to Universal Credit.

Universal Credit is usually paid monthly in arrears, like a salary, so this can make it harder for families to budget, especially during the transition to UC, as there may be a wait of several weeks before you receive your first payment.

To get a clear picture of how the changeover to Universal Credit will affect your family, and to ensure that you are claiming everything that you are entitled to, we would recommend that you seek further advice. A number of national organisations can help you with this Contact has a free helpline: 0808 808 3555 and also has fact sheets and other information about Universal Credit. You can also find useful information on the following websites: www.citizensadvice.org.uk, www.gov.uk, www.moneyhelper.org.uk and www.turn2us.org.uk.

Further support

The Family Fund: What is it?

The Family Fund is a charity for families on low incomes who have children aged under 17 with a long-term disability or a serious or life-limiting condition.

Many parents have found that the fund is a great help for one-off payments for specific things like washing machines, fridges, beds, outings and holidays in the UK, or even abroad. Eligibility depends on the family in question being in receipt of certain government benefits.

Although the fund considers most requests, they give priority to people whose social or financial needs are greatest. They cannot help fund equipment or services that are the responsibility of health or social services to provide. You cannot get help for a child who is in the care of the local authority.

How do I apply?

You can apply online at: www.familyfund.org.uk, or call: 01904 550055. When you apply, you will need to give details about your child and what help you need. The fund will ask for details of your income and savings, and may contact your consultant for more information on your child’s disability. The first time you apply, someone from Family Fund may call you to discuss your application if they have questions or need more information. You may want to ask a professional working with your family to support your Family Fund application.

Budgeting Loan/Advance

A budgeting loan (known as a budgeting advance for those on Universal Credit) can be requested for certain essentials. If the loan/advance is agreed, the DWP will pay the loan/advance on top of your Universal Credit or benefit payments. The loan/advance will have to be repaid from future benefit payments. To qualify for a loan/advance you must have been in receipt of benefits for 26 weeks before applying, but there are exceptions. For example, if you are receiving Universal Credit and request a budgeting advance for getting or keeping employment, this time period does not apply.

A budgeting loan/advance can be used to help with:

- buying furniture and household equipment, clothing and footwear

- paying rent in advance and/or removal expenses to new accommodation

- the costs of improvement, maintenance and security of your home

- essential travelling expenses and expenses due to you getting or starting a job

- maternity or funeral expenses

- hire purchase payments and other debts, but only if the money was borrowed for expenses in any of the other categories.

Although the loans are interest free, budgeting for repayments can be difficult, as an agreed sum will be taken out of future benefit payments.

Short-term Benefit Advance/Universal Credit Advance

You can request a short-term benefit advance/Universal Credit advance in the following circumstances:

- if you have made a new benefit claim but will be in financial need until you receive your first payment.

- you have had a change in circumstances which will increase the amount of benefits you are entitled to.

- if there is a delay in paying your benefits, for example if there is a technical problem in processing your claim or payment.

To qualify, you must have claimed a benefit first and be able to show that without the advance there will be a risk to you or your family’s health or safety. Again, the advance is a loan which must be repaid from future benefit payments, which can make budgeting difficult. You can find out more about budgeting loans/advances and short-term benefit advances from your local Jobcentre Plus or go to Turn2Us (www.turn2us.org.uk) and search for ‘benefit advance.

Food Banks

If you are in crisis, contact your local Children and Family Centre/Family Hub. They may be able to support you and refer you to other organisations, such as a food bank, if needed. You can also contact your local Citizens Advice for information or Trussell Trust, who can give you more information about your local food bank, see Local Directory for details.

Fares to hospital

Parents can spend a small fortune getting to hospital, particularly if children need frequent treatment or can’t travel on buses or trains. Your hospital social worker or the consultant’s secretary should help you find out whether your child can get an ambulance, hospital car or help with taxi fares. When taking your child out of the area for treatment you might get help with travel costs. Ask your consultant to write to the Health Authority for you, making it clear that the journey is a necessary part of your child’s treatment and you should get it paid. The Family Fund will also consider requests for help with travel costs to and from hospital.

If you are on Universal Credit and meet the criteria, or receive Income Support, income-related Jobseeker’s or Employment and Support Allowance and for some people receiving tax credits, the Hospital Travel Cost Scheme can help with fares to hospital.

If you do not receive any of the above benefits but your income is very low, you may still be able to claim travel costs through the NHS Low Income Scheme.

For more information on both schemes go to: www.nhsbsa.nhs.uk/nhs-help-health-costs, or call: 0300 330 1343.

Council Tax reduction for people with disabilities: What is it?

If you’ve had to adapt your home especially for your disabled child, your council tax bill could be reduced to that of a house in the band immediately below yours. If your house is already in the lowest band (A) you get a reduction of a sixth of your bill. The sort of adaptations that might make the difference are:

- Additional space for a wheelchair to be used indoors, such as widening doors and corridors, and/or removing partition walls.

- An extra room to meet special needs, such as a downstairs bathroom or toilet.

The Council Tax Discount Scheme: what is it?

If there are fewer than two adults resident at your home, you can get a discount on your council tax bill. This is worth 25 per cent if there is one adult. Where there are no applicable adults, a council tax exemption is granted. Not all adults are counted for council tax purposes so it’s worth checking with your district or borough council, see Essential Contacts.

How do I get it?

Check your district or borough council’s website, or call their council tax team to make an application for a reduction in your council tax band or a discount on your bill. If you have missed out in the past, you can ask for either of these to be backdated to the date they first applied.

Motability

Families of disabled children who receive the higher rate mobility component of DLA (or PIP if over 16) can use it to buy or lease a car, or an electric wheelchair, through a scheme called ‘Motability’. To use it, your child must have at least 12 months of their DLA award left to run. For details of the schemes call Motability on: 0300 456 4566 or go to www.motability.co.uk.

Charitable Grants

Some charitable organisations make grants for specific purposes like holidays or buying a special piece of equipment. We have included a directory of grantmakers. You can also use Contact’s online grants search tool, provided by Turn2Us. Go to https://contact.org.uk and searching for ‘Online grants’. If you know of any other grant-making organisations and would like to share them with us and other families, please let us know.

There is a knack to securing grants from charitable funders. Here are some tips to help you:

- Most grantmakers produce guidelines, often available online, detailing what they give to and just as importantly, what they don’t support. Make sure you read these guidelines carefully before applying.

- Remember that each funder has their own interests and, as a result, a one-size fits all application that you send to several grantmakers is bound to fail. Instead, tailor your application to suit the criteria of each funder.

- Avoid using jargon or technical language – grantmakers are notorious for their love of plain English.

- Ask another parent or perhaps a professional to read your application before you send it off. If they have trouble reading it then so might the grant-maker.

- Don’t be over-emotional or rage against injustice – state your case in detail and provide as much information as you can in support of the application.

- Explain what else you’ve done to try to secure the things your child needs, including requests made to statutory services.

- Even if it is not required include a supporting letter from a professional, for example, a doctor, social worker or teacher, whichever is the most appropriate.

- Try and make your application as presentable as possible. An attractive and easy to read application is more likely to be successful.

- Make sure you send everything the grantmaker requests. If you don’t your application might be delayed or, worse still, ignored.

- Remember that competition for grants is fierce. Many good applications are turned down simply because of demand – so make your application as strong as possible but don’t blame yourself if your first attempts are not successful.

Parental leave

Parental leave is unpaid. But it gives parents the right to time off work to look after their children and is more generous for parents of disabled children. It’s even more important to strike a better balance between work and home when you have a child with SEND, and in order to give more time to family commitments.

Employers and employees can agree their own terms and conditions for parental leave. It’s worth checking your own contract; it may be more generous than employers are legally required to offer. For example, it may include a few days’ paid parental leave.

If there is no mention of parental leave in your employment contract, the legal minimum automatically applies. This is called the ‘Fallback Scheme’. For every child in your family getting DLA, each parent can take up to 18 weeks’ parental leave.

Although parents can only take up to four weeks a year, the leave can be taken on a daily basis, rather than a week at a time and it can be taken at any time up until your child’s 18th birthday. This is a real help if you’ve ever felt uncomfortable asking for time off to get your child to medical appointments, to attend annual reviews, or lovely things like school plays and concerts.

To take parental leave, you must have worked for your employer for at least a year. You must also give your employer at least 21 days notice, in writing. In some circumstances your employer can postpone your leave for up to six months, if they feel your absence would significantly disrupt their business. If this happens to you, call the Working Families free legal helpline for advice on: 0300 012 0312.

Childcare Inclusion

West Sussex County Council provides advice, guidance and training for early years and childcare practitioners to enable children with additional needs to attend mainstream provision. The local advisory team helps practitioners to develop the expertise and to make the necessary adaptations to support the learning and development of children in their care. This may include visits to settings before a child has even arrived to ensure plans for their inclusion are in place.

Where appropriate, funding may be made available to settings in line with criteria to enable the needs of individual children to be met. Funding is also made available to supply mobility equipment where this is recommended by health professionals, to support the child’s inclusion. Parents or childcare practitioners interested in the support available should contact them through the Family Information Service.

Free Entitlement Funding

Universal Free Entitlement funding is available for all three and four year olds and provides 15 hours per week (570 hours per year) of early education and care with Ofsted-registered providers. All parents can access these free hours, regardless of their circumstances and some two year olds are also eligible, including those in receipt of DLA and those whose parents are in receipt of certain benefits.

Some working families with three and four years olds may also be entitled to Extended Free Entitlement, depending on their individual circumstances. If they meet the criteria, they may be able to claim an additional 15 hours of care, bringing their total allocation to 30 hours a week (1,140 hours per year).For eligibility criteria, go to: www.westsussex.gov.uk/freechildcare. You can find out more about childcare and benefits at: www.childcarechoices.gov.uk.

Disability Access Fund

The Disability Access Fund is available to three and four year olds who receive DLA and Free Entitlement Funding. Early years’ settings must identify children who are eligible. The setting can then apply for a one-off annual payment of £615 to help them to support the child and meet their individual needs. If your child is eligible, it is worth checking with your childcare setting to ensure that they have applied.

Tax-free Childcare

This government scheme is run for parents who are working, including those who are self-employed. Parents can open an online account to pay for Ofsted registered childcare for children under 12 (or under 17 if disabled). For every £8 you pay in, the government will pay in an extra £2.

The maximum the government will pay in is £2,000 per year, provided you contribute the maximum of £8,000. For a disabled child, the government will contribute a maximum of £4,000 per year, as long as the parent pays in £16,000. It is important to note that this scheme can affect your other benefits, so it is worth taking expert advice before making any decisions. For more information about Tax-free Childcare and other ways to get help with childcare costs, go to: www.childcarechoices.gov.uk or www.westsussex.gov.uk/freechildcare.

Parents in full-time education

If you are in full-time education, you can apply for a Childcare Grant to help you if your disabled child is under 17 and you are eligible for student finance. For more information, go to: www.gov.uk/childcare-grant.

Personal budgets

A key focus of SEND reforms has been giving parents and children more involvement and control in decision-making, as well as more choice and flexibility in the way in which care and support is provided.

Direct payments have been available to young people and parents of children with SEND for some years to pay for social care provision, what has changed is that since the Children and Families Act 2014, disabled children and young people have the right to request a Personal Budget as part of an EHC Plan.

A Personal Budget is an amount of money identified by the local authority to deliver parts of the provision set out in your child’s EHC Plan. It gives you the flexibility to choose which services and support to use in order to meet your child’s outcomes.

A Personal Budget is not the total amount of money available, as it does not include the cost of a school place or existing support provided by a school, such as additional learning support.

There are four ways in which a Personal Budget can be paid:

- As a Direct Payment, which you can use to arrange and pay for your child’s support yourself.

- As a ‘notional budget’ where the council uses your child’s Personal Budget to arrange the support on their behalf.

- As a ‘third party arrangement’, where funds are paid to another individual or organisation on behalf of the child and they manage the funds.

- Or you can opt for a combination of all three.

Direct Payments

If you decide that you want to receive your child’s Personal Budget as a Direct Payment, you can use it in a number of ways to meet the outcomes identified in their EHC Plan. For example, you may choose to employ someone, often known as a ‘Personal Assistant’ (PA) to care for your child, or buy into a local service, like a day nursery, an after-school club, holiday playscheme, or even a residential short break.

Unless there are exceptional circumstances you cannot use Direct Payments to employ a close relative who lives in your household, although you can use them to employ a relative who lives elsewhere.

Until a child is 18, parents can use Direct Payments to pay for and arrange services for their child. Young people over 16 can choose to take responsibility for their Direct Payments or share the responsibility with their parent while they are under 18.

Once a young person is 18, they can still nominate a parent or carer to receive their Direct Payments and arrange support for them if they prefer. In this case a parent or another person manage their child’s financial affairs as an ‘appointee’.

If your child is assessed as needing support, they can’t be refused Direct Payments if you want them. The law says local authorities must tell you about Direct Payments and support you if you want them. If you’re already getting services, your child’s social worker should have made you aware that Direct Payments are an option.

Why choose Direct Payments?

Direct Payments allow you to have choice and control over the support you receive in order to meet the outcomes that have been identified for your child. Direct Payments give families greater flexibility, however you will have a more active role to play, which will include ensuring that money is used to meet the outcomes identified in the plan and providing bank statements and receipts to show how the money has been spent.

Direct Payments in West Sussex

If your child is under 18 and does not currently access any services and you think they may be entitled to some, ring the Integrated Front Door and ask for an assessment, for over 18s, call the Adults CarePoint. You can also complete an initial enquiry form online at: www.westsussex.gov.uk.

In West Sussex, Direct Payments for parents are managed by the local authority. You can find more information and support on Direct Payments and being an employer through Independent Lives, a user-led charity working with disabled people, people with care needs, and carers, to enable people to lead full, active and independent lives.

The charity is commissioned by the local authority to provide a range of services including Direct Payment information and advice, banking administration, payroll and recruitment solutions, so they can ensure that managing your child’s Direct Payments is simple and as stress-free as possible. For more information go to: www.independentlives.org.

What should a Direct Payment cover?

A Direct Payment should be equivalent to the cost of the service run by the local authority. If there is no council service, you may have to negotiate over how much it would realistically cost to provide. Local authorities must make payments that cover the reasonable cost of buying a service to meet your family’s assessed needs. There should not be a standard ‘take it or leave it’ rate.

If you are planning to employ someone using Direct Payments, you will have legal obligations, so the amount you get must cover things like National Insurance (NI) payments, holiday and sick pay, as well as basic pay. It is also a legal requirement that you purchase employer’s liability insurance.

Remember, you really need to negotiate on the basis of a 57.6 week year, because anyone you employ has an entitlement to 5.6 weeks’ paid holiday and you will need someone else to cover while they are away, and they will need to be paid, too!

Finding the right people

Finding the best people to support your child is really important. They need to be suitably qualified and experienced in caring for children with SEND, but it is equally important that they are able to establish a good rapport with your child, and that he or she likes them, too! Some parents already have someone in mind who knows their child, or you may want to ask for recommendations from friends, but other parents advertise locally, or use a matching agency to help them.

If you are going to advertise for a PA, but you’re worried about the process, Independent Lives has lots of advice and resources, including templates for writing job descriptions, adverts, letters and interview questions. Find out more at: www.independentlives.org/recruiting-a-pa. You can also find a list of OFSTED registered child-minders at: www.childcare.co.uk.

You probably won’t want to meet everyone who applies for a PA role, but once you have looked at all the applications you can draw up a short-list of people to meet. You will also need to act in accordance with equal opportunity legislation. You can find guidance on this at: www.independentlives.org/recruiting-a-personal-assistant-pa.

Being an employer

Many parent carers feel a little daunted about being an employer, but it doesn’t need to be complicated. If you are concerned about it yourself, Independent Lives runs a payroll service. They can manage tax deductions, National Insurance contributions, holiday and sick pay and will provide you with a pay slip for your employee every month. This services does cost extra but will be allowed for in the Direct Payments you receive.

If you would prefer to run payroll yourself you can do this using HMRC’s free payroll software ‘Basic PAYE tools’, which can be downloaded online at: www.gov.uk/basic-paye-tools.

Keeping track of how you spend the money doesn’t need to be a burden, either. You will need to open a bank account just for Direct Payments. The law says that local authorities must check that the money you are given is used for what has been agreed. So using Direct Payments does require you to keep accounts and records of how the money is spent. But you should not have to make weekly or even monthly returns if this doesn’t make sense in your circumstances.

Where to look for more help with benefits

Locally, in the voluntary and community sector, Citizens Advice offers information, advice and support to claim disability related benefits. Contact information for your Citizens Advice centre can be found in the Local directory at the back of this book.

At the time of writing, Reaching Families is working on a new benefits advice service for parents, carers and families of children and young people with SEND, which will launch in 2022. For more, see Benefits Advice, Essential Contacts.

Disability Rights UK is a national charity committed to breaking the link between poverty and disability. It publishes The Disability Rights Handbook: a comprehensive guide to benefits and services for disabled people, their families, and carers.

Be warned that it’s not light reading and is also updated each year, so unless you have a special interest in benefits, it’s probably best to look for it in the reference section at your library.

Preparing for Adulthood

What changes at 16?

Generally, there is an expectation that parents are responsible for their child’s ‘keep’ up to the age of 20. So, as long as your child stays in full-time education at school or college or certain types of approved work-based training, under the current system you can continue to claim the following benefits for them:

- Child Benefit, as long as a parent’s individual income is not greater than £50,000 a year.

- Additional elements for a dependent child or young person as part of Universal Credit, or Child Tax Credits (if you do not yet claim Universal Credit.

- Additional amounts paid for a child or young person through legacy benefits such as Income Support, Jobseeker’s Allowance, Housing Benefit.

What you must do

To ensure these payments continue, you must notify the relevant benefits offices that your child is continuing in education or approved work-based training after Year 11.

We have heard from parents in West Sussex who did not know this and found themselves in a tricky situation as their Child Tax Credits stopped. Because young people must stay in education or training until they are 18, they thought that their Child Tax Credits/additional UC allowances for a dependent child would continue automatically, but they don’t.

To ensure that you have continuity in your benefit payments, you must let your benefits office know that your young person is staying in full-time education and what course they will be studying, no later than 31st August. You must do this every summer until your child finishes their further education – usually when they are 19. The Child Benefit Office should send you a form to fill out to say that your child is staying in education or training. If you do not return it, your Child Benefit will also stop.

This is an example of things that can catch parent carers unawares, and it also highlights the need for good planning. At some point in the near future your benefit payments may reduce if your young person leaves home to live more independently. Start thinking about how you will manage without your child’s contribution.

‘Half our household income comes from money because of James’ special needs. He’s already decided he’s leaving home when he leaves college, so if I don’t start planning for my future, I might end up destitute!’

When should a young person claim benefits as an adult?

When a young person reaches 16, they have the right to manage their own money or ask someone else to do it for them. This means that young people have the option to claim benefits in their own right, which can be the key to your young person getting other sorts of financial help.

If your child can manage their own money, it makes sense for them to claim PIP for themselves at 16. Even if they do, they can still be considered a child for the purposes of other Universal Credit allowances and Child Benefit. For more on PIP, see here.

Usually you need to be 18 to claim Universal Credit but special rules allow some 16 and 17 year olds to claim, including some disabled young people, who can claim if they get DLA or PIP and they are also assessed as unfit to work. This means that most young people in full time education need to go through a medical assessment known as the work capability assessment before they can receive Universal Credit.

However, if your child claims Universal Credit in their own right, you will lose any benefits you get for them as a dependent, even if they remain in full-time non-advanced education or approved training. So you will need to weigh up whether it is best for your young person to claim in their own right or continue claiming benefits for them as part of your family. The decision you make will depend on your circumstances. You will need to compare what you get now, claiming with your child as a dependent, against what they will get if they claim in their own right. If they do claim their own benefits, how much will you lose?

Reasonably well-off families who don’t qualify for the child element of Universal Credit (or Child Tax Credits under the old system) or receive just a small amount may find that their household is better off if their young person claims benefits in their own right. Those on lower incomes who get more Universal Credit may be worse off if their young person claims benefits in their own right, as you could see a reduction in your allowances overall.

To get a clear picture of what is best for your family, it is sensible to get expert advice before you make any decisions. For benefits advice available locally, see Essential Contacts. You can also ask a number of national organisations for information and advice: Cerebra: https://cerebra.org.uk/download/money-matters-a-guide-for-parents. Contact: https://contact.org.uk search for ‘benefits’ or call their helpline: 0808 808 3555. National Autistic Society: www.autism.org.uk and Scope: www.scope.org.uk search for ‘benefits’.

Work Capability Assessments

If your child wants to claim Universal Credit at 16, they may have to have a Work Capability Assessment. This places people in one of the following three categories:

- fit for work

- limited capability for work - you can’t work now, but you can prepare to work in the future, for example by writing a CV.

- limited capability for work and work related activity – you can’t work now and you’re not expected to prepare for work in the future.

If your young person is severely disabled and it is decided that they have limited capability for work they will get the limited capability for work and work-related activity component of Universal Credits. For further information about Universal Credit for young people go to: https://contact.org.uk/wp-content/uploads/2021/03/universal_credit_young_person.pdf.

What if your child can’t manage their own money?

A young person can claim benefits in their own right, even if they need someone else to act on their behalf. Awards for DLA are usually reviewed in the five months before a child reaches 16. PIP can be claimed once a young person is 16. Claiming PIP at 16 is often the first time young people have to think about their ability to manage significant amounts of money.

In reality, most disabled young people don’t feel ready to take on this responsibility and ask their parents to look after their money for them, pay their bills and give them an allowance. This means parents take on the role of ‘appointee’, who acts on a young person’s behalf in all benefits matters, not just PIP. This includes telling the Department of Work and Pensions (DWP) about any changes in their circumstances, banking benefit money for them and using it in their best interests.

Before an appointee is agreed, the DWP will arrange to visit both a disabled young person and the person (often the parent) making the application to act on their behalf. The DWP has to agree that a young person is not able to act on their own behalf.

If you haven’t had a letter from the DWP to ask whether you will be your child’s appointee, call a few months before your child turns 16.

Tips for planning ahead

Talk to your child about the pros and cons of managing their own money and how much of it they want to practise budgeting with. Agree how it will be split: how much will be pocket money, how much they will contribute towards the help you give them and what they will save.

When you arrange the DWP visit, make the representative aware of your child’s communication, learning, or mental health problems and whether they’re careless about money or vulnerable to financial abuse.

‘I reminded Alex about last month when he’d raided his savings and spent £80 in an hour on the pier buying rides and fish and chips for ‘friends’ and how angry he had been that he couldn’t get the trainers he’d been saving for. We all agreed it’s best that I manage his DLA for another few years.

What should your child pay towards their ‘keep’?

Once your child starts claiming benefits, it’s a good idea to agree how much they will contribute to the household bills and how much they’ll pay towards the care you give them, and other stuff like running them around in the car. This way any changes in either of your financial circumstances shouldn’t leave you out of pocket and the young person will get a better idea of how much it costs to live and how far their money goes.

Personal Independence Payment (PIP)

If your child has been receiving DLA, you will be sent a ‘hybrid’ adult DLA claim pack about seven months before their 16th birthday. If your child is almost 16 and you wish to claim for the first time you will also be asked to apply for PIP.

What is PIP?

Personal Independence Payment or PIP is a benefit for people between the ages of 16 and 64 who face extra challenges carrying out everyday activities or getting out and about. Like DLA, PIP is not taxed or counted as income for means-tested benefits. It’s not based on National Insurance contributions and can be paid to people who are in or out of work.

Special Rules

If a person is diagnosed with a terminal illness and is unlikely to live more than six months, they can claim PIP under Special Rules. Though claiming benefits is likely to be the last thing on your mind if you’ve just been told your child has such a poor prognosis, it is a good idea to try to claim it on their behalf as soon as you feel able; PIP can’t be backdated to before the day you actually claim it, even in such distressing circumstances.

Claiming PIP under Special Rules means that you don’t have to wait three months and don’t have to fill in the ‘How your disability affects you’ form. Instead, if you call the dedicated team on the number below, they will ask you some questions. You won’t have to attend a face-to-face assessment, either.

If PIP is awarded on these grounds, a young person will automatically be awarded the high rate care component. To claim under special rules, call the dedicated team at the DWP on: 0800 917 2222.

Claimants are asked to get a medical report to send in for their claim. Ask your child’s consultant for a DS1500 medical report. If you’d rather not read what they write, ask for the DS1500 to be handed to you in a sealed envelope, or you can ask them to send it directly to the DWP for you.

A passported benefit

Like DLA, PIP is a passport to disability premiums. If you are still claiming legacy benefits, this will be in the form of extra Child Tax Credits. Under the new system, if a young person is included in your Universal Credit claim, a disabled child premium will be payable, on top of any child allowances. Under Universal Credit, benefits are capped at around £20,000 a year, but for households who have a person claiming PIP this cap does not apply.

If a young person is entitled to the daily living component of PIP, then someone else may be able to claim Carer’s Allowance for looking after them. Getting the higher rate of the mobility component will entitle a young person to access the Motability scheme and a Blue Badge.

What’s different about PIP?

PIP is paid in two parts: a mobility component based on a young person’s ability to get around, and a daily living component based on their ability to ‘look after themselves’.

Each component of PIP will be paid at one of two rates known as the standard and enhanced rate: the DLA care component currently has three. Realistically, this means that if you are already getting the lower rate of the care component, you are more likely to be at risk of being turned down for PIP. The weekly payment rates for PIP are the same as the rates payable for DLA.

DLA rules allow for some people with certain conditions to automatically qualify for DLA components at specific rates. Under PIP no-one, (other than people who are terminally ill) will have any automatic entitlement. Nearly all awards will be time-limited, with very few indefinite awards. It is likely that most awards will be shorter and reviewed more frequently than awards for DLA.

PIP includes a broader range of practical skills than were included under DLA. For example handling money, understanding how much change to expect and budgeting are new key tasks.

PIP shines a torch on social skills: asking about the person’s ability to mix and get on with others. It’s easier to know where to include how a young person struggles to ‘read’ other people’s intentions or understand how what they say and do can have an impact on how others feel towards them.

PIP uses an entirely new set of criteria, a points-based system, to decide whether someone qualifies for the benefit, and if they do at what rate they will be paid. For most young people the new assessment process will also involve a face-to-face meeting with a health professional. This will be covered later in the chapter.

When will a young person need to claim PIP?

If your child is 16 or over and they have never claimed DLA, they will need to claim PIP. If your child is over 16, and you report a change in ‘circumstances’, which might affect the rate of their DLA award, they will be reassessed under PIP. If your child is rising 16 or they are over 16 and their existing DLA award is coming to an end, but you have not been sent a DLA renewal form, you’ll get a letter to tell you when and how to apply for PIP.

You cannot apply for PIP until your young person is 16, so there will be special arrangements allowing current DLA awards to run on after your child’s birthday, until a decision is made on their PIP claim. We understand these claims will be looked at by a specialist team of decision-makers.

You can choose to make an application for PIP even if your child has an indefinite award of DLA. This would make sense where a young person is likely to be awarded a higher rate under PIP than their current DLA award. For example if they have high support needs throughout the day but not at night.

As appointee, you need to act promptly as soon as the Department for Work and Pensions (DWP) writes to you or your child about PIP. If neither of you reply to the invitation to apply for PIP within 28 days of the invitation letter, their DLA award will be suspended. If a claim is made less than four weeks after the suspension, the DLA award will be restored until a decision is made on the PIP claim. If you do nothing during the four weeks suspension, your child’s DLA claim will end permanently eight weeks after they wrote to you. There will only be limited appeal rights against this decision.

How to start a claim

Ring the Department of Work and Pensions (DWP) on: 0800 917 2222. You can call on behalf of a young person, but they should be with you when you do this.

It’s worth getting organised before you ring. You will be asked for basic details like your child’s name, address, date of birth and main area of difficulty. You will also need to give your child’s National Insurance number, their doctor’s or health worker’s name and have information to hand about time your child has spent abroad, in a residential school, care home or hospital. The DWP will also ask for bank or building society details.

As long as a young person has had the additional needs for at least three months, expects to have the same needs for at least the next nine months and meets the residency test, they will be sent a ‘How your condition affects you’ form. The claim pack is personalised. It comes with notes to help you fill it in.

Making a strong claim for PIP

PIP uses a points-based system to decide whether someone qualifies for the benefit and if they do at what rate they will be paid. To make a successful claim for PIP, a young person needs to score eight points to qualify for the standard rate of component. 12 points or more qualifies them for the enhanced rate.

This new type of assessment will focus on a young person’s ability to carry out everyday activities. There are ten daily living activities and two mobility activities and a set of descriptors for each: what a young person scores against each activity should reflect the difficulty they experience in the following areas:

- preparing food

- eating and drinking

- managing treatments

- washing and bathing

- managing toilet needs or incontinence

- dressing and undressing

- communicating verbally

- reading and understanding written information

- mixing with others

- making decisions about money

- planning and following journeys

- moving around

The number of points a young person scores in the last two categories determines if they’ll get the mobility component, and at which rate. Scores in other categories determine whether they get the daily living component.

Each activity has a list of descriptors with different scores. Some activities attract more points: speaking, eating, and planning a journey carry more weight than activities like budgeting, planning a meal and washing. You can only be awarded points for one descriptor in each activity, so it’s worth giving as clear a picture as you can. To get any points for an activity, you need to satisfy at least one of the descriptors for at least 50 per cent of days.

The new assessment asks you to explain the challenges a young person faces doing a task safely, to an acceptable standard, as often as they need to, as well as the individual way they tackle a task when they don’t have someone to help and have to ‘get by’. It’s important to focus on these prompts.

Tips for claiming PIP

- Do your best to ‘tell it how it is’. Young people are often the ones who know how their illness or disability affects them, and most will be invited to a face-to-face assessment, so think about how you can involve them in making the claim.

- Gather evidence: advice, assessments and/or reports, from health, education or social care practitioners. If your child has an EHC Plan, make sure you have a copy.

- Include as much supporting information as you can with the claim. If possible, send evidence to support what you’re saying. Copies of things like diaries, medical reports, speech and language assessments and EHC Plans are often useful. These may help to persuade a decision-maker.

- Make photocopies of everything you send (both the claim pack and any extra evidence) you will need to refer to them if you want a decision looked at again, or when the claim is reviewed.

- Keep copies of everything in a safe place– you may not have any paperwork returned to you before a face-to-face interview. It can also help you the next time your child’s PIP is reviewed, as they may have left school or college, and evidence of their level of need and abilities will be harder to come by.

- Think about returning your claim by Special Delivery. It protects you from the claim getting lost in the post, or the DWP saying they haven’t received it as you get a receipt for Special Delivery items from the Post Office and the DWP has to sign to say they’ve received it.

PIP applications are time-consuming and detailed, so it’s worth getting help to fill them in. Disability Rights UK has a very helpful guide to making a PIP claim. It includes the scoring system for the twelve activities, go to: www.disabilityrightsuk.org/personal-independence-payment-pip.

Unpicking the jargon: what counts as help?

- You will be assessed as able to carry out an activity ‘unaided’ (and that means score no points for it) if you can carry it out ‘without the use of an aid or appliance; or supervision, prompting or assistance.’ These terms carry very specific meanings within PIP regulations.

- ‘Assistance’ means physical ‘hands on’ help: it does not include spoken encouragement or explanation.

- ‘Supervision’ means the ‘continuous presence of another person for the purpose of ensuring (the disabled person’s) safety’.

- ‘Prompting’ is ‘reminding, encouraging or explaining to another person’: it doesn’t explicitly require the presence of another person, but must be essential for the activity to be carried out’. So, for example, the other person might be at the other end of the phone.

- ‘Aid or appliance’ is any device that improves, provides or replaces a disabled person’s impaired physical or mental function; and includes prostheses. Examples might be adapted cutlery, modified kitchen utensils, a standing frame, communication apps, grab rails. They count even if the claimant doesn’t use the aid but could be ‘reasonably expected’ to use one but does not for reasons of cost, availability or cultural reasons.

- ‘Unaided’ also relies on a disabled person being able to carry out the activity ‘in a way that is safe and reliable, does not take too long and can be repeated as needed. If they cannot do so, another descriptor must be chosen and ultimately the individual may be considered to be unable to complete the activity at all.

Don’t leave it up to an assessor to have to guess. It’s always worth giving a very detailed account to explain what happens in reality. For example, to get the higher rate of the mobility component, and score 12 points on grounds of physical impairment alone, you will need to provide evidence that a young person who ‘can stand and then move a metre, cannot move more than 20 metres, either aided or unaided’. This seems a really tough test, especially as the distance under DLA to get the higher rate of the mobility component was 50 metres.

The next descriptor, that a young person may be able to walk more than 20 metres but no more than 50 metres, only scores 10 points. This is not enough to get the higher rate under PIP, or access the Motability scheme or a Blue Badge. Remember though, this descriptor can only be applied if a young person can do this safely, to an acceptable standard, repeatedly and in a reasonable time. If you can explain how a young person cannot meet one or more of these additional requirements, it is likely that you can reasonably argue the descriptor that best fits is the one that attracts 12 points.

‘Zoe has cerebral palsy. She can walk 40 metres with a walking frame, but to do this she needs to draw on all her resources. The physical and thinking effort of getting her body to do what she wants is exhausting. Just this short distance takes her at least five minutes. The first 20 metres takes her two minutes but the next 20 metres takes at least three minutes. Then she needs to stop and rest. She needs to be able to sit down and take a break for at least five minutes. On a bad day she would need a longer rest. This means on a good day it will take Zoe 15 minutes to walk 80 metres. Even on a good day, Zoe would not be able to repeat this more than twice, on another day she may only be able to repeat this once. On a bad day Zoe may not be able to repeat this at all. Any amount of walking has an impact later in the day. If Zoe has been out in the morning, she will need to sleep most of the afternoon to recover.’

This means that at best, using her walking frame, Zoe may be able to walk 160 metres, but it would take her 35 minutes. Then she would not be able to walk any further for several hours. So on a good day, it would take Zoe at least 155 minutes to walk 161 metres. It could be argued that Zoe cannot maintain this level of activity ‘repeatedly’ or ‘in a reasonable time’. She certainly cannot do it even once without her walking frame.

If a young person has good and bad days, it’s really helps to explain this too. Describing exactly what they can do two days out of seven and what they can manage on the other five helps the assessor work out which descriptor (and so how many points) best reflects a young person’s abilities. Points will be awarded for the descriptor that best fits 50 per cent of the time.

As with DLA, PIP claims are less likely to be successful if you don’t use the opportunity to give examples. Many of us have found that we’ve had to add additional sheets of paper to explain the help our child needs in sufficient detail. The clearer the picture you can give, the less likely it is that a young person will be called for a face-to-face assessment.

In addition to the Disability Rights guide mentioned previously, Contact resources on claiming PIP, including a downloadable guide. Go to: https://contact.org.uk and search for ‘benefits and money.’

Face-to-face assessments

It is very unlikely that severely disabled young people will be asked to attend a face-to-face assessment. Nevertheless, to avoid unnecessary interviews, be sure to send as much supporting evidence, and give a detailed account of how they cope with daily activities, their communication or access needs. Most other young people will be required to attend a face-to-face assessment. For most claimants and especially disabled young people, this is likely to feel overwhelming. There is a lot you can do to make this a fair and a positive experience.

A young person should always have someone to support them and may need help to think about who is the best person to ask. It needs to be someone who is both ‘on their side’ and understands how their disability impacts on everyday life. This can be a friend, support worker, or health, education or social care practitioner. Most often this is likely to be you, their parent carer.

It’s really worth preparing for this meeting. Start keeping a diary so you can illustrate what your child can do and the help they need. A young person may not have had much involvement in writing their PIP claim and, even if they have, the last time either of you looked at it will have been months ago. So read through it again together. Spend a bit of time asking and answering ‘open’ questions. ‘Can you tell me how you would make a cup of tea?’, ‘How did you get here today?’ but don’t practise too much.

Assessments may happen at your home or at an assessment centre. If you need to travel, plan how you will get to the venue. If a young person is very anxious it may even help to practise the journey and check out the building a few days before for things such as accessibility. Travel expenses will be reimbursed: keep receipts or note mileage if you come by car. Parking charges are covered, too.

On the day, arrive in good time. Make sure you are both as comfortable and feeling as calm as possible. We understand you can make a record of what is said at the meeting but you have to be able to give a copy to the assessor and it makes sense to say well in advance if you’d like to do this.

The healthcare professional who does the assessment will want to see for themselves how what is written on the PIP form matches up with the young person they are meeting. If a young person struggles to ‘follow’ the thread of a conversation or is likely to misunderstand what other people say, you will need to act if you notice this is happening. Doing this in a clear, positive way: repeating and phrasing questions more simply, using words they know, checking back they really understood the question and everyone else has understood what the young person is trying to explain will help the assessor to understand what the difficulties are.

Often a young person will have a very good idea about what is difficult for them and how they manage. But even so, some may say what they think the healthcare professional wants to hear. You will be able to add to and comment on what a young person says if you feel their own perception of their abilities is unrealistic. It helps to give real examples of occasions when a young person hasn’t had the help they needed and things haven’t gone well or routine daily activities didn’t get done at all.

It’s important the assessment goes at a comfortable pace and it’s okay to ask for a break, if a young person needs one. Be aware that the healthcare professional will observe and note everything: from whether a young person lets a door go in your face as you come into the room, to how they put their coat on.

If there is any sort of physical examination, a young person should not feel pushed to do more than they can safely manage or anything that is painful. Agree beforehand how they will tell you or signal that they cannot carry on.

Towards the end of the assessment, the healthcare professional should give a summary of their findings and ask if there are any questions or if there is anything more you would like to add. Later they will write a report and send it to the DWP.

The decision about whether to award PIP, at what rates and for how long is made by the DWP. You will be contacted by letter about the outcome.

What happens if you do not agree with a decision?

The outcome letter will explain what to do next if you do not agree with a PIP decision and about time scales. The first thing to do is to contact the DWP, you can do this over the phone. Say what it is that you do not agree with and why. It may be that you feel a young person should be entitled to the enhanced rate for the mobility component rather than the standard rate. Or maybe you disagree with the length of the award. Always be aware that when you ask for a claim to be looked at again, the DWP can look at both components as well as the length.

If no award has been made at all, you should get a phone call from the DWP to explain why. You should ask that another decision maker look again at the claim: this is called ‘requesting a mandatory reconsideration’. If you ask, the DWP must do this. Ask for copies of all the information, including any reports submitted by the healthcare professional. This can help you build a case. Say that you will write to give detailed reasons why you disagree.

Go through the paperwork carefully, note if there is any difference of opinion between what you put on the claim pack and the healthcare professional’s report, if any evidence has been disregarded or if you need to gather more reports to support what you say. Ask for extra time if you need it and say when you will write back to them. Otherwise a decision may be made straight away.

The right to appeal a PIP decision only arises once a different decision-maker has reviewed all the information and you have the outcome in writing. Hopefully, the first decision will be revised in your child’s favour and you won’t need to go to appeal. If it isn’t, all is not lost.

Whether or not the decision is changed, you will get a mandatory reconsideration notice, which you will need to send in with your appeal. You have one calendar month to submit the appeal, which is made to the Social Security and Child Support Tribunal. To appeal online, go to: www.gov.uk/appeal-benefit-decision/submit-appeal. Alternatively you can appeal by post by filling in a form ‘SSCS1 notice of appeal’, which you can download from the link above. Whichever method you choose, say clearly what part of the decision you disagree with and why. Send it back within the one month timescale and make sure you keep a copy for your records.

You will get a pre-hearing questionnaire. It’s best to opt for a face-to-face hearing – your chances of a favourable outcome are much greater if you do. You do not need to take someone like a solicitor to represent your young person. Experience of DLA appeal tribunals tells us that parents and carers are generally best placed to ‘tell it how it is’ and say it from the heart.

If you have other supporting evidence, send it in at least a week before the hearing. If you only get a report the day before, take it with you and explain about this, as it is usually the case that the Tribunal panel will accept evidence on the day. Hearings are informal and you will be able to comment on and add to what your child says. It’s always best to prepare again as you did for the face-to-face assessment with the healthcare professional.

Other sources of financial help

Once your child is 18, you may be able to apply for a Carers’ Grant from the council. It can help if you want to take a break and need a temporary increase in a care package, or a short stay somewhere else for your son or daughter while you’re away. The grant can also help towards the cost of a holiday, travel costs, days out with the person you care for, leisure, adult education, or support to help you stay in employment. You’ll need a carer’s assessment to be eligible. You can request an assessment by calling or emailing the Adults’ CarePoint, see Essential Contacts for details.

Some charitable organisations make grants for specific purposes like holidays or buying a special piece of equipment. You’ll find details in a directory called A Guide to Grants for Individuals in Need, which should be available in bigger libraries.

Further information:

Carer’s Allowance

Financial support for students in further and higher education

Social care

Direct Payments

Funding for adaptations in the home

For details on travel and transport schemes and concessions, including Motability, see here and here.

Financial planning, wills and trusts

Perhaps one of the hardest parts of being a parent carer is knowing that one day you won’t be around to look after your child. It is natural to worry about what will happen to them and how they will cope without you, especially if they have a disability that means they are unlikely to live independently.

One of the most important things any parent can do is to ensure that they have make a will and that they have named a guardian, in case anything happens to them before their child(ren) reach adulthood.

It’s easy to assume that this is all that needs to be done, but if you have a young person with a disability, it’s not quite as straightforward.

Even if your child might manage their own money, there is also the need to consider that their disability could leave them open to financial exploitation by others. Leaving your child money or property could also prevent them from claiming means-tested benefits.

Some families think they can cover this by leaving all their money to the sibling of their disabled child. They assume that an informal agreement in which the sibling promises to look after the disabled person for the rest of their life will be enough. But this is a risky idea, as, officially, the money would be the sibling’s. If they die first, get divorced, or simply decide that they have changed their mind, your disabled child could be left with nothing.

What can you do?

In order to ensure that your disabled child is provided for, you may want to consider setting up a trust. This is a formal legal agreement that sets out what will happen to your assets (your money and property) after you die and how the money will be used to benefit the disabled person.

A trust has two or more people, called ‘trustees’ who hold the money on behalf of the disabled person, who is called the ‘beneficiary’. The trustees are named in your will. When your will is written, you also write what is known as a ‘letter of wishes’, which explains to the trustees how the money should be used. For example, you may want to include the sorts of activities that your disabled young person enjoys and the therapies and services that you would like them to benefit from, using the money in the trust.

When a trust is first set up, you may be asked to make a small payment (usually of around £10) to open it. The trust will only become fully active once you have died and your assets such as your savings and money from property is added.

You can find out more about wills and trusts through Mencap (www.mencap.org.uk), who have a produced a free guide and can also signpost you to experienced solicitors locally. Email: willsandtrusts@mencap.org.uk or call: 020 7696 6925.

To ensure that you choose the right type of trust for your young person it is important that you choose a solicitor with the right qualifications and experience. This is a highly specialised and complex area of law, so we suggest that you check that the solicitor is a member of The Society of Trust and Estate Practitioners (STEP): www.step.org or call: 020 3752 3700.

Section two: Finding your way

Social life and travel

Having a child with SEND often means that our family life is very different to the one we had imagined and it can bring extra pressures. When you have to make time for endless appointments, phone calls, or therapy sessions, it is very hard to find the time for ordinary things, especially if you have other children. At first, many of us find it difficult to get any sense of normality. But we realise how important it is to try to do things as a family.

‘You have to realise that this is just one child in your family, and you are a family and you all count – each one of you counts. You focus so much on your SEND child that everyone else goes out of the window, and it’s getting a sense of proportion again.’

Not everyone has a traditional nuclear family. As well as our child’s condition, some of us also have to deal with the isolation of being a single or lone parent. This can be especially hard if your child’s condition is one that makes it difficult to ‘fit in’.

We know that getting out and about can be extremely difficult. You may feel worried about lots of aspects including: how to get there; whether your child will be accepted; how to deal with problems and also how to deal people being judgemental about your child and their condition, especially if it affects their behaviour.

However, finding social activities that your family can enjoy can help restore normality. Most of us have found places where everyone can join in – the local swimming pool, park, local farms, zoos, or quieter beaches where you and your family won’t have to worry about what others think.

Often, parents who have children with similar conditions to yours are easier to be with, as they understand the challenges and you don’t have to explain. It’s also helpful to be able to chat to other people in a similar position so you can share ideas and tips.

‘We usually go to Drusillas. I feel sorry for my oldest sometimes, because he’s almost like an only child; he really wants someone along to play with. So we always take his cousin with us. They get on brilliantly together and she’s also brilliant with Alex, my child who has additional needs, and it’s so lovely to see her included as well, instead of just being ignored.’

Choosing leisure activities

Like everyone else, children with SEND want to have a social life and take part in activities they enjoy. But, as a parent, you want to know that they will be welcome, safe, and supported. And if you have other children it’s important that they can enjoy themselves, too.

When you are thinking about new activities you may have lots of questions. Do the people running the activity have prior experience of children with SEND? Do they understand what difficulties there may be, and how will they make sure my child can access the activity? What will happen if my child has a meltdown? Is there a safe place to let off steam? What are the rules? Are they fair and make sense to children? What’s in place to help a child deal with disappointment? Will my child be encouraged to do as much as they can for themselves but not left to struggle with things they can’t manage? Will they have appropriate boundaries in place?

Sometimes, the easiest way to find out is to sit in on a session to see how it is run. Written policies are fine, but what happens in practice is more important. Also, ask other children, young people and parents what they think. Their views might offer different perspectives that enrich your impressions.

Don’t dismiss a club because parents are required to stay. Some of the best activities are organised by other parents and volunteers who cannot take responsibility for supervising children who need the toilet or want to sit out for a bit.

Sometimes, you have to balance the value of a free or inexpensive opportunity for your child against the chance to have a break yourself. These are often the places to meet other parents and exchange advice and support.

It’s also worth asking the organisers if they offer a ‘taster’ session, as many do. This can be really helpful and many of us have found that this has encouraged us to try activities that may be completely new to us and our children. Once they’ve tried a session ask your child how it went and listen to them – you are the expert at ‘reading’ your child, no matter how they communicate. If you sense that they have not enjoyed an activity, don’t give up. You may have to try a few before you find one that your child takes to.

Help with the cost of activities

Horsham’s Leisure Access Card

(LAC) allows residents to save money on leisure activities and attractions across the Horsham District. To qualify you must live in Horsham District and receive a benefit such as Carer’s Allowance or Universal Credit. If you are aged over 16 and a full-time student, you are also eligible. For more go to: www.horsham.gov.uk/sport-and-leisure/leisure-access-card or call 01403 215100.

What’s available in West Sussex?

The following section lists some of the activities that we have found to be inclusive and open to all. Some have been set up where children with and without SEND can have fun together– these are often referred to as ‘inclusive activities’, while others are specifically for children and young people with additional needs.

All children are different, so it is advisable to contact these groups yourself so that you can get more information and decide whether the activity is suitable for your child and something they might enjoy.

At the time of writing the following information is correct, however due to the disruption caused by the Covid-19 pandemic, we recommend that you check with the venue for updates and changes to services. Contact information for venues and services can be found in our Local Directory.

Many venues run Assisted Access schemes, which entitle a disabled person’s carer free entry – ask when booking and take a copy of your young person’s DLA/PIP award with you to show at the till.

Babies, toddlers and under-fives

‘Something I do with Jane, and I’ve found it has been absolutely brilliant, has been a music group – it’s for under-fives and she loves it!’

Your child will probably enjoy many of the mainstream activities available locally for this age group, such as toddler groups, soft play centres, music groups and gym clubs as well as some of the more specialist services on offer. NB: to save space we have not duplicated contact information here for organisations and groups that are listed in our Local Directory.

Bookstart is a national programme that encourages parents to read with their children. Bookstart Baby is a pack containing two books and a rhyme sheet. Usually it is given to parents by in their first year, or you can ask for one at your local library. Bookshine, Booktouch and Bookstart Star are special packs tailored to children with hearing or vision loss or conditions affecting their motor skills. These are available through your local library.

When your child is three, he or she will receive a Bookstart Treasure pack, with a picture book and a booklet with tips on reading together. This is available through your child’s nursery, preschool or playgroup, or your local library.

The Family Information Service has details of a range of activities the county and families can also borrow toys from their local libraries, while some Children and Family Centre/Family Hubs also lend out sensory toys. Go to: www.westsussex.gov.uk/toylibraries to find out more.

Gym Joeys (Bognor Regis): preschool gymnastics to help to develop gross motor skills. Welcomes children with additional needs. See Local Directory.

Kangaroos (Haywards Heath): runs monthly Saturday ‘stay and play’ sessions for children aged up to five years who have additional needs, including those without a formal diagnosis.

Local libraries: you can register your child for their own library card as soon as they are born. Many libraries offer baby and toddler activities, such as rhyme time and story time, and also have a toy library.

Pavilions in the Park (Horsham): runs inclusive parent and baby and parent and toddler swim sessions. Tel: 01403 219200.

Springboard Project (Horsham): runs a monthly group for young children aged 0-6 with SEND on a Sunday afternoon. They also run ‘play ‘n stay’ groups for all families, and have a toy library.

Southwick Leisure Centre runs Mighty Mites, birth to five years inclusive soft play. Go to: www.southdownsleisure.co.uk.

Inclusive family-friendly activities

Air Arena (Chichester) offers trampolining and interactive activities, including a Helping Hands SEND session and home educator sessions.

Brighton and Hove Albion has a wristband scheme for fans of all ages who have hidden disabilities such as autism.

Brooklands Go Carts (Worthing) offers speed-adjustable karts and assisted drives, where an instructor works the pedals.

Charlotte’s Tandems loans tandems, tag-alongs and other equipment free of charge exclusively to people with disabilities or additional needs.

Chichester Golf Club has a wheelchair-accessible adventure golf course.

Cinemas: Regular autism-friendly screenings take place at various cinemas around Sussex, including Cineworld, Brighton, Chichester and Crawley; The Dome, Worthing; Duke of York’s Cinema, Brighton. Lights are left on low, the sound is turned down and the audience is free to get up and move about as they please. It’s a great way of introducing any child with SEND to the delights of going to the cinema. Consider getting a CEA card (see National Directory), which allows a disabled person over eight years of age to take a carer free of charge to films at participating cinemas.

Crawley BMX Track is an inclusive track run by Wheels for Well-being, that has specially adapted bikes and part-time instructors.

Curiosity Hub runs regular inclusive tech events for children, young people and adults in Brighton. www.thecuriosityhub.com

Family days out: there are a number of nearby places that we have found very enjoyable for our children and for a day out with the whole family such as: Drusillas Zoo, Alfriston; Fishers Farm, Wisborough Green; Tilgate Park, Crawley; the Wildfowl and Wetlands Trust, Arundel; and Washbrooks Farm, Hurstpierpoint. An increasing number of venues have Changing Places fully accessible toilets, with adult-sized changing benches and a hoist, including Drusillas and Tilgate Park.

Flip Out (Chichester) offers trampolining, rebound therapy and a dedicated SEND session.

Gully’s Days Out allows members to request tickets to different attractions including: SEA LIFE Brighton, Butlin’s, Cineworld and Hollywood Bowl.

Head2Head Theatre (SB) half-day activities for the family during the school holidays, featuring an interactive, multi-sensory ‘walkabout’ performance.

Lodge Hill (Pulborough) (SB) accessible lodges and an accessible activity centre. It holds regular activity days for young people aged up to 18 years with SEND. See: www.facebook.com/lodgehillcentre.

Reading, activities and supporting communication: it is also worth joining your local library. As well as borrowing books and DVDs, you can also access activities including holiday reading challenges and some larger libraries also hold regular sensory story sessions for children with SEND. If your child or young person has communication needs, you may be interested in West Sussex library’s communication library, Understand Me, which has free resources to borrow including flashcards, recording devices and other resources to support people who use Alternative and Augmentative Communication (AAC). Letterbox Library is a book club that specialises in celebrating equality and diversity. They have a selection of books that feature children with SEND as characters. Listening Books is an audio book library for children and adults who find reading difficult because of illness or disability. Readers pay a membership fee and can access titles as downloads, via streaming or as MP3 CDs. The local library service in West Sussex also offers this free of charge.

Sports activities: if your child is interested in sports activities, Activity Alliance is a one-stop shop for information about different sports opportunities for disabled children and adults, see National Directory.

Time Aside runs sensory art workshops at play schemes, parties, family fun days, and other events.

Woodland Wonders Forest School (Chichester and Horsham) offers woodland experiences and bushcraft sessions for young people with SEND and their families, plus six-week courses for adults with learning difficulties. Tel: 07786 368800 or go to: www.woodlandwondersforestschool.co.uk.

Clubs and groups for children and young people

Joining a mainstream club can be daunting, especially for children who look different, have difficulty making themselves understood, or struggle to understand new situations. Talk to the staff about how your child can be helped to feel comfortable. Your child might want to think about how they would like to be introduced and whether they’d like to do this themselves. They might find it helpful to go along with a companion to help them join in. With preparation, some children are able to join organisations such as Scouts or Guides. Many of these groups will have advisers who can help you find a suitable pack for your child.

As well as inclusive activities, there are also activities that are set up for children with SEND. Finding the right ones may take time, but they are an important step in increasing your child’s confidence and independence, so don’t be afraid to try a few until you find something your child really enjoys.

Listings marked (SB) are Short Breaks providers. Contact information for organisations and groups can be found in our Local Directory.

Active Sussex offers opportunities for young people with disabilities to participate in sporting activities across Sussex.

Adur Special Needs Project (Shoreham) runs various clubs for five to 15 year olds with special needs in Shoreham and the surrounding area.

Albion in the Community (AITC) (SB) runs disability-specific and inclusive football sessions for young people with conditions such as cerebral palsy, autism and Down syndrome, sensory impairments and physical disabilities.

Allsorts Youth Project runs clubs and groups in West Sussex for LGBT+ children and young people.

Angling4Education (SB) runs inclusive fishing sessions for young people aged four to 18 with SEND. Some sessions are open to parents and carers.

Ariel Othello’s (Burgess Hill, Crawley, East Grinstead, Horsham, Shoreham) dance, singing and acting classes to children and young adults with SEND.

Arun Sports Association for the Disabled (Bognor Regis) sports for people with disabilities aged nine+ in Arundel and Bognor Regis.

Aspens (SB) runs various groups for children aged *+, teens and young adults. It also offers sibling support and family fun days.

Barnardo’s Moving Forward Project (SB) sitter services, befriending and individual support. Emphasis on building confidence and independence and enabling social inclusion and skills.

Branching Out Club (Chichester) (SB) a monthly sports club for children and young people aged two to 18 years with disabilities.

Challengers Chichester Youthscheme (SB) is a club for disabled teenagers aged 13 to 18 years. Young people can take part in activities such as bowling, trampolining, or head into town to shop or have lunch.

Chanctonbury Community Play Scheme (Worthing and Storrington) (SB) provides four weeks of volunteer-led respite care during the summer holidays for children aged four to 19 with an EHC Plan.

Chichester Bowmen inclusive archery, with a one-off taster session, as well as longer archery courses: www.chichester-bowmen.co.uk.

Chichester Fencing Club meets at Chichester High School for Girls.  Tel: 07708 508332, email: info@chichester-fencing-club.org.uk, www.chichester-fencing-club.org.uk.

Cobnor Activities Centre Trust (Chichester) inclusive water activities plus off-water activities such as angling and archery. Runs sailability for people with disabilities, Also holds a week-long summer camp for people with disabilities, aged 14 to 45 years, which is wheelchair accessible (no hoist).

Crawley Town Flyers is a football club for young people with SEND aged 10+. Meets at K2, Crawley. Tel: 07877 327567 (Mo Hussain).

Downsman Bowls Club incorporating Crawley Blind and Disabled Bowlers is for people of all ages and abilities. Email: via the online contact form at https://downsman.secure-club.com.

The Duke of Edinburgh Award offers young people aged 14 to 25 the opportunity to help others, acquire new skills and make new friends, while working towards a nationally recognised award: www.dofe.org.

Escape Youth Club (Burgess Hill) works with young people aged 11 to 17, to develop their social and emotional skills. Email: info@theescapeyouthclub.com or go to www.theescapeyouthclub.com.

Extratime (Shoreham) (SB) is a holiday scheme for children and young people aged five to 18 with and without disabilities. Provides a variety of activities, games, and trips out.

Ferring Country Centre (Worthing) provides training and work experience for people with learning disabilities. Garden centre, horse riding unit and café. Riding therapy for children and adults with a wide range of disabilities.

Footloose Dance Group (Crawley) is a weekly, term-time dance and movement class for children and young adults with learning disabilities.

Forest Flyers Disability FC (Horsham) holds weekly football coaching sessions for young people aged 10+ with disabilities at Forest School.

Girlguiding is fully inclusive and provides specialist funding and support to those with additional needs aged five to 25. See National Directory.

Girls Group (Haywards Heath) is a club run by Aspens for young females aged 11 to 18 with social communication difficulties.

Golden Lion Children’s Trust organises days out for children and young people with special needs.

Guild Care (Worthing) (SB) runs short breaks for young people with special needs: Ashdown Club (five to 12 years); Ashdown Youth (12 to 18); Ashdown Extra (18-30) and Ashdown Siblings (five and over).

Hack Horsham runs inclusive STEAM (Science, Technology, Engineering, Arts, Maths) workshops and events for children and young people.

Horsham District Junior Disability Swimmimg Programme is run by Horsham District Sports Development for disabled children and young people and held at Billingshurst, Bluecoat Sports Centre Christ’s Hospital, Horsham and Steyning leisure centres. Go to: www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities, click on ‘inclusive swimming lessons’.

Horsham District Sports Development Reaching Higher Project offers various arts and sports activities including: Athletics; Cricket (12 to 25); Dance; Digital/Video Production course (14 to 19); DJ’ing workshops (12+); Karaoke (nine plus); Rebound Therapy; and Wheelchair Basketball (11+).

Horsham Wheels for All provides a range of adapted bikes for people of all ages and abilities to enjoy cycling on the athletics track at The Bridge Leisure Centre (Broadbridge Heath).

Kangaroos (SB) runs various clubs and activities for children with SEND, including Stay and Play (0 to five); PALS holiday club (six to 14); Champions and All Sports after school clubs (both eight to 14); Breakaway (12 to 18); TeenScene (12 to 18) and a Transitions group (16 to 21).

KIDS (SB) supports children and young people (six to 18) to help them go into the community and access groups.

Mid Sussex Marlins Swimming Club runs two clubs for children and adults with disabilities: Starfish at Dolphin Leisure Centre, Haywards Heath, and Dolphins at the Triangle Leisure Centre, Burgess Hill.

Moving Barriers Club (Crawley) runs sports and activities for children and young people aged six to 25 with disabilities.

MXT Swimming School (Storrington and Steyning) has swimming teachers experienced in working with children with autism, muscular dystrophy, ADHD, dysphasia, dyspraxia and cerebral palsy.

National Autistic Society Horsham Club (SB) is for autistic children and young people aged between five and 18. It offers a variety of fun activities in a safe, autism-friendly environment.

Parents and Carers Support Organisation (PACSO) (SB) runs a number of after-school clubs, weekend activities, and holiday playschemes for children and young people with special needs aged from birth to 25 years.

Regis Gymnastics (Bognor Regis) is a gymnastics club that offers dedicated sessions of rebound therapy to children and adults with disabilities.

Riding for the Disabled Association (RDA) offers lessons at various centres around the county.

The Scout Association is an inclusive organisation with sections for children age six to adults aged up to 25 years. See  www.scouts.org.uk.

Short Breaks for Disabled Children local authority team that commissions holiday clubs, after school clubs, buddy schemes, family fun days, and short breaks at home or in the community.

Sport Without Boundaries is a charity that helps develop sporting opportunities including boccia, new age kurling and athletics for children and young people with disabilities.

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH) runs social activities, a youth club, residential breaks and community groups.

Sussex Sailability based at Sussex Yacht Club, Shoreham, caters for people aged 14+ with physical, learning and sensory disabilities. Has a hoist to lift people from wheelchairs to boats. Email: sussexsailability@gmail.com or go to: www.sussexsailability.org.

Springboard Project (SB) (Horsham) provides activities and short breaks for disabled children and young people in their Horsham centre and the community. Also offers short breaks activities in Crawley and Worthing.

Sunbeam Swimming Club (Horsham) is for disabled people of all ages that runs weekly at the Pavilions in the Park. Prior to attending for the first time, please email Sarah Burling (coach).

Sussex Cricket in the Community has disability hubs offering cricket and multi sports sessions. Go to https://sussexcricket.co.uk/disability.

Sussex Bears Wheelchair Basketball Club is has a wheelchair league for young people aged 14+. Also offers Wheelchair Basketball for over tens. Meets at Brighton, Lancing and Worthing.

Sussex Wasps (Brighton) is a sports and social club for people with disabilities of all ages.

Sylvia Beaufoy Centre (Petworth) runs a youth club for children aged 10 to 19 years. Contact them via the online form at https://sylviabeaufoy.org.

Tadpoles Swimming Club (East Grinstead) is for people of all ages with various disabilities and diagnoses who would benefit from swimming and water therapy.

Tu Vida (previously Crossroads Care) (SB) provides short breaks to children and young people aged 11 to 18 years. Workers meet with the family and together decide how the young person can be best supported to participate in leisure and social activities.

WBC Cares offers safe, adaptive boxing that’s affordable and accessible for people with disabilities, with specific programmes for children, youths at risk and people with physical or learning disabilities. Classes in Brighton, Horsham, Southwater and Worthing.

Wheels for Well-being (Crawley) sessions are run on a specialist, traffic-free, cycle track with access to adapted cycles for wheelchair users and people with disabilities. They offer coaching sessions, group rides and can be booked for group events.

Whizz-Kidz Club (Crawley) enables wheelchair users aged 8 to 25 to make friends and have fun. Activities include music, dance, art, sports, beauty therapy, and cooking trips.

Worthing Harriers (Worthing Leisure Centre) has a wheelchair racing for all ages, as well as a Special Olympics athletics team for those aged 8+. See: www.worthingharriers.com.

Worthing Lego Club runs monthly for children and young people with additional needs and their families at St John’s Church Hall.

Worthing Leisure Centre (SB) runs inclusive sports activities, after school clubs and a holiday programme.

Worthing Mencap runs a café, information centre, charity shop, and various clubs, activities and services for people with learning disabilities, their families and carers in the Worthing area.

Worthing Town FC runs inclusive football teams for children with SEND. For more information, go to the website (see Local Directory) and click on ‘teams’ then select ‘inclusive football.’

YMCA East Surrey (SB) (Crawley) runs holiday clubs Yippee (five to 11) and Yip4Youth (12 to 18) as well as Y Impact SEND mentoring (11 to 18) and Lifeworks Inclusive sports activities for young people aged 16+.

Preparing for adulthood

‘He’ll go out now and again, but if he does go anywhere, we have to take him there and pick him up, because he can’t get the bus to go on his own.’

Friendships and having a social life are an important part of adulthood. Having friends who share similar interests, have fun with us, laugh at the same sort of things and share both the good and difficult times is immensely valuable. Young adulthood is the time when many people make friendships that will last a lifetime.

Experiences at school or college can affect young people’s access to friends and leisure outside school. National research has found that many young disabled people experience isolation, loneliness and exclusion. Parent carers often find that they have to do a lot to support their child’s social life and to help them meet new people or maintain friendships. In addition, for teenagers with special needs, making friends and meeting up and going out with them can be trickier than it is for other teenagers. This may be because of mobility issues, communication difficulties or because they are unable to travel independently.

Online gaming and social media has opened up a whole new way of interacting with people, and for our young people it can be a lifeline. However, they can be very vulnerable online, so it is worth looking at information and guides from organisations such as the NSPCC and Thinkuknow to ensure that your young person is surfing safely. You can find more on internet safety here.

Making friends

Many of us meet our friends through a common interest – work for example, a sport, an evening class, or through other friends. Parents whose children need more support with friendships might start by thinking about what their young person enjoys doing and then look for a club or an activity where they can meet other young people with similar interests.

The role of parent and friend are very different and it is important to find ways of helping your young person to develop friendships outside the family. This might mean having a carer or assistant who is a bit closer in age to them, who can take them out and about or to activities. If your child has a social worker, you could talk to them about getting direct payments to pay for a personal assistant. If you have had no involvement with social care so far, your child will need an assessment of their needs to see if they are eligible for support from social care, see here for more information.

Many of the suggestions we have made in the previous section listing clubs and groups cater for young people up to 18 years of age and some up to 25 years. There are also a number of clubs and activities available specifically for older teens and/or adults. NB: to save space we have not duplicated contact information here for organisations and groups that are listed in our Local Directory.

Apuldram Hub Club is a social and activities club held in Chichester for adults with learning disabilities. Tel: 01243 967322, email: Hub@apuldram.org or go to: www.apuldram.org/hub-club.

Arena Sports Centre (Bognor Regis) runs a ten-week Access 4 All scheme for 16 to 25 year olds with SEND. Includes initial consultation and health screening. Free admission for carers exclusively supporting young people with SEND. Tel: 01243 870000 or go to: www.arenasportscentre.co.uk.

Arun Sunshine Group (Littlehampton) is a social club for adults with learning difficulties. Tel: 01903 714930, email: derek@arunsunshine.org.uk or go to: www.arunsunshine.org.uk.

Aspens runs a group for young adults with autism aged 18 to 25, which is based online and in the community. See Local directory.

Asperger’s Syndrome Self Advocacy (ASSA) runs a social and activity group for over 18s with Asperger’s that meets in Littlehampton and Chichester. See: www.facebook.com/ASSAWestSussex or email: assagroupws@gmail.com.

Asperger’s Voice is an advocacy group for adults with Asperger Syndrome in West Sussex which aims to bring people together so they can support each other and make friends, as well as raise awareness and acceptance for people with Asperger’s. The group meets monthly in Burgess Hill. See: www.aspergersvoice.org.uk.

Blue Oasis Clubs holds club nights, autism-friendly film screenings and outreach for young people and adults with learning disabilities and their friends. Horsham tel: 01403 215216; email: blueoasishorsham@gmail.com or see: www.facebook.com/HorshamBlueOasisClub.

Blue Starfish Club (Worthing) runs club nights three times a year, for people with learning disabilities aged 16+ to socialise and show their skills as DJs and musicians. Run by Worthing Mencap and others.

Buzz Buddies is a social group run by Stay Up Late and Extratime that supports adults aged 18 to 25 with learning disabilities to meet up and enjoy evening activities together. Currently meeting online due to Covid-19.

Carousel (Brighton) runs inclusive creative arts projects and groups for young people and adults with learning disabilities. Includes film, dance, music, and club nights. Runs the Blue Camel Club and Oska Bright Film Festival.

Chichester Festival Theatre has a youth group, Chichester Festival Youth Theatre (CFYT) with two sessions for young people with SEND, which meet on Wednesday evenings (Horsham) and Friday evenings (Chichester).

Esteem runs a number of inclusive services for young people aged 14 to 26 a weekly The Drop-In where they can socialise with others, structured activities such as mini golf and kayaking, counselling and walk and talks to boost well-being.

Flamingoes Club (Crawley) is a swimming club for over 18s with physical or learning disabilities. Meets at K2, Crawley. Tel: 07880 178706, email: kpford@outlook.com or go to: www.crawley.gov.uk/disabilitysport.

Gateway Clubs are social clubs for adults and older teens with disabilities held in: Burgess Hill: 07592 609785, Crawley: 01293 516703 and East Grinstead: 07592 609785.

Grace Eyre Foundation runs a Friendship Group as well as a number of activities and workshops for people with learning disabilities. Friendship group is currently online due to Covid-19: www.grace-eyre.org/what-we-do/learning-and-having-fun.

Outreach 3way runs several projects for young people with learning disabilities and autism, with a focus on promoting independence and building confidence and self-esteem. Out There! provides sports and leisure activities for people aged 16+. Daytime clubs run in Crawley, Burgess Hill, and Bognor Regis. Daytime and evening clubs run in Horsham, Worthing and Chichester. They also have a Day Centre in Ifield, Crawley, which runs groups and workshops and the S.M.I.L.E service, for people with profound learning disabilities to learn new skills.

The Point is a resource unit for people aged 18 to 50 with physical or visual disabilities. It is run by Scope West Sussex in Chichester and offers a variety of activities and trips.

Ready and Able Sports Club (Horsham) is an inclusive sports and social club for people aged 18+ held at Bluecoat Sports Centre, Christ’s Hospital.

Springboard Project runs 12 – 18 (SB) for 12 to 18 year olds with SEND, with sessions held in Horsham, Crawley and Worthing. Also runs 18 – 25s (SB) for 18 to 25 year olds with SEND.

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH) runs support groups in Burgess Hill, Crawley and Worthing, as well as a variety of social activities including trips to the pub, bowling and online activities for people with Spina Bifida and/or Hydrocephalus.

Worthing Mencap has several clubs for young people and adults with disabilities, including: Buddy’s Friendship group for people with learning disabilities, Buddy’s Badgers for older adults with learning disabilities and Out of Hours Club for young people with Asperger’s syndrome.

Buddy schemes

A number of organisations run buddy schemes, which enable disabled children and young people to access projects and services in their community via the help and support of a volunteer buddy. Like after-school clubs, these types of schemes also enable parents and carers to take a break.

Aspens (previously Autism Sussex) runs a 1:1 buddy scheme for young people autism.

Gig Buddies was founded by Stay Up Late a charity that pairs up people aged 18+ with and without learning disabilities and/or autism who have similar interests, so they can go to gigs and other cultural activities together. It also runs Sports Buddies, which pairs up people to exercise and do sports activities together.

Grace Eyre Foundation runs a travel buddy project for people with learning disabilities to help them travel independently in the community. Tel: 01273 201900.

Accessibility

For many families, outings and leisure activities have to be planned with care, especially for those of us who have children and young people with complex needs.

For trips out and about locally, your borough or district council produces leaflets about access, which can be a useful starting point. They have details of a range of accessible places locally, including disabled toilets. The council also has information available on disability access in your area and can provide RADAR keys, which are used to open accessible public toilets as well as certain play equipment in inclusive play areas for a small charge.

Many of the larger theme parks such as Legoland and London Zoo offer concessions and organise special days for disabled children and their families, so contact them directly for details.

For trips to new places, The Rough Guide to Accessible Britain is helpful, as it contains hundreds of ideas for worry-free days out, with reviews, hints and tips on some of the UK’s best attractions written by and for disabled people. Each entry contains all the access information you need to enjoy your day including disabled parking and wheelchair access. Download a free PDF from: www.accessibleguide.co.uk.

You can also find information and reviews on many attractions via AccessAble at: www.accessable.co.uk.

Fully accessible toilets

Changing Places campaigns for fully accessible toilets that provide the space and extra equipment disabled people may need. The toilets include a height-adjustable adult-sized changing bench, a hoist, enough space for the person and up to two carers.

For more, go to the Changing Places website, www.changing-places.org, for a location map of all fully accessible toilets as well as a journey planner that shows service stations with these facilities. In West Sussex, you can find Changing Places toilets at:

- Broadbridge Heath: The Bridge Leisure Centre

- Burgess Hill: the library, Janes Lane Pavilion and The Triangle Leisure Centre

- Chichester: Northgate car park and Westgate Leisure Centre

- Crawley: County Mall Shopping Centre and Crawley Hospital’s Urgent Treatment Centre

- East Grinstead: Jubilee Community Centre and Kings Centre

- Gatwick Airport: arrivals at both terminals, plus a smaller Changing Places toilet at departures in the south terminal.

- Handcross: Nymans National Trust house and gardens.

- Haywards Heath: Dolphin leisure centre

- Horsham: Collyer’s College, and Swan Walk shopping centre

- Norton, near Chichester: Aldingbourne Country Centre

- Shoreham-by-Sea: Southlands Hospital

- Worthing: Dome public toilets, Splashpoint Leisure and Tesco West Durrington

Shopmobility

This scheme operates in many city centres and shopping centres and is open to everyone of any age, including people with a temporary illness or injury and children with mobility issues. Each centre will do what they can to help people access local shops and facilities. As well as hiring mobility equipment, some schemes can offer an escort to help people. You need to register before the first time you use it and there is a small charge for hire. Towns in West Sussex that run a shopmobility scheme include:

- Bognor tel: 01243 830077, or www.bognorshopmobility.co.uk.

- Chichester go to: www.cfirst.org.uk and click on ‘transport’, call 07932 802778 or email shopmobility@cfirst.org.uk.

- Horsham go to: www.horsham.gov.uk/parking/shopmobility or tel: 01403 230721.

- Littlehampton tel: 01903 733004, or go to: www.shopmob1.plus.com.

- Worthing tel: 0800 009 6693, or go to: https://freedompowerchairs.org.uk/shop-mobility.

To find out about other schemes across the country, see the national Shopmobility website at www.nfsuk.org.

Help with travel

Disabled parking bay scheme

If your child has problems with mobility and has a Blue Badge you may be eligible for a disabled parking bay outside your house, as long as you do not already have off-street parking. It’s important to note although it will be outside your house, the parking bay is available for use by anyone who has a Blue Badge. To apply, go to: www.westsussex.gov.uk and search for ‘disabled parking bay’.

Disabled person’s bus pass

Anyone aged five or over with a ‘physical or mental impairment’ may be eligible for a Disabled Person’s bus pass, which offers free bus travel 24/7 for West Sussex residents whose journeys start or finish in the county. There may be time restrictions if the pass is used in other areas. Children and young people who are permanent West Sussex residents are eligible if:

- They have a disability or have suffered an injury, which has a substantial and long-term adverse effect on their ability to walk.

- They do not have arms, or have long-term loss of the use of both arms.

- They are blind or partially-sighted.

- They are profoundly or severely deaf.

- They are without speech.

- They have a learning disability.

- If aged 17 or over, they applied for a driving licence they would have it refused on the grounds of a medical condition.

Passes are issued by West Sussex County Council. For more information and an application form go to their website www.westsussex.gov.uk and search for ‘Free Disabled Person’s Bus Pass’. Alternatively you can call 0330 222 6222 or email buspass@westsussex.gov.uk.

Disabled person’s railcard

If you do not wish to have a Disabled Person’s bus pass, you may be able to apply for a Disabled Person’s Railcard instead. While the railcard doesn’t offer discounts on child fares (15 and under), it will allow one person travelling with the cardholder to get a third off most rail fares. To check eligibility and apply go to:  www.disabledpersons-railcard.co.uk.

If you are not eligible for a card, you can get discounts of up to 50 per cent off fares if your child or young person is travelling in a wheelchair or they have a visual impairment or are blind. See ‘other discounts’ on the website.

National train travel

National Rail Enquiries provides information for disabled passengers about accessibility, train operating companies and has accessibility maps to show stations with lift access to platforms and more. Go to: www.nationalrail.co.uk or call: 0800 022 3720 to arrange for assistance on a train journey.

You can also request passenger assistance via a new app called ‘Transreport’ which is available via the App store and Google Play. For more go to: www.nationalrail.co.uk/stations_destinations/passenger_assistance.aspx

Travelling to London

London can seem a challenging destination for disabled travellers, especially as many underground stations are unsuitable for wheelchair users.

The Transport for London (TfL) website, https://tfl.gov.uk, offers information about accessibility to help people plan their journeys. They also have a number of accessibility guides that give details of step-free stations, lifts, accessible toilets and other useful information covering tube, bus, river taxis and other forms of transport in the capital. Guides can be downloaded in PDF, large print and audio format from the TfL website.

Preparing for adulthood

There is more on this in the Travel for young people chapter.

Holidays

‘It has taken me quite a bit of time to adjust to the need to do all this preparation, but then it’s been worth it because it’s made our holidays easier and I’m less stressed.’

We all feel in need of a break every so often, but sometimes the thought of all the planning makes a holiday seem too much effort. There are several organisations that can point you in the direction of places that will be accessible and welcoming to everyone, whatever their needs.

3H Fund (www.3hfund.org.uk) runs subsidised group holidays for physically disabled children.

AccessAble (www.accessable.co.uk) also provides up-to-date information on accessibility at many public venues and holiday accommodation throughout the UK.

Contact (https://contact.org.uk) has a free downloadable guide to holidays, play and leisure activities for families of children with SEND.

Happy Days charity (www.happydayscharity.org) funds and organises holidays and days out for families with children with SEND aged between three and 17 years.

Tourism for All (www.tourismforall.org.uk) has information about all sorts of accommodation and dining options, as well as a huge range of activities and autism-friendly and wheelchair-friendly attractions.

Increasingly, travel agents are able to provide better information on facilities for disabled people, as they begin to realise there’s a big market out there. You need to ensure your child’s needs will be catered for, and it is worth asking for these arrangements to be confirmed in writing when you book. It’s amazing how many people still think that an entrance up half a dozen steps is accessible for a wheelchair user!

You should also make sure that any insurance you take out is appropriate, as you might find that ‘pre-existing conditions or illnesses’ are not covered in the small print. You can find out about specialist policies from organisations such as Tourism for All, or Cerebra.

Gatwick airport

If you are flying with a person with SEND, it does require some extra planning before you go. If your child is a wheelchair user or has reduced mobility, it essential to request special assistance before you travel. It is best to do this via your airline or travel agent when you book your tickets. Special assistance must be requested at least 48 hours prior to your journey.

If you require an eagle hoist 4 to transfer your child from their wheelchair to their plane seat, this should be booked at least 24 hours before you travel by emailing: lgweaglehoist@wilsonjames.co.uk with the following information: customer name and contact details, date of travel and flight details, passenger’s height and approximate weight and whether you have used the service before.

When you arrive at the airport there are special help points where you can request assistance if you need help with a wheelchair or baggage. They are located on terminal forecourts, short stay car parks, stations, baggage reclaim halls and within the terminals where there are long walks.

Gatwick airport has two fully accessible Changing Places toilets in arrivals at both terminals as well as a smaller one in the departure lounge of the South terminal. If you are departing from the North terminal, go to the special assistance desk, who will escort you to use the toilet in arrivals. Please allow plenty of time to get across the terminal.

Gatwick Airport also runs a ‘Hidden Disability Assistance Programme’. It is available to anyone with autism or other hidden disability such as a cognitive impairment or dementia, for example. The service provides sunflower lanyards, which are available from their special assistance desks. These identify the wearer as someone who needs additional support from staff. The website also has a link to an autism-friendly visual planner to use before and during your journey.

For passengers with disabilities such as autism, a cognitive impairment or dementia there is a sensory room in the North Terminal. It’s free to use, but you must pre-book a slot on the website before you travel.

Gatwick offers other assistance to disabled passengers, including an Aira app for people with sight loss. They are also trialling a service for passengers requirring oxygen therapy. You can find out more about the full range of assistance available at: www.gatwickairport.com. Choose ‘passenger services’, then ‘special assistance’.

Other places where you can use a sunflower lanyard

Heathrow, Stansted, Luton and Manchester, and an increasing number of regional airports have also rolled out sunflower lanyards to discreetly flag to staff that the wearer has a hidden disability and may need extra support or assistance.

A number of shops have also come on board, including Tesco, Sainsbury’s stores, Marks and Spencer and Bluewater shopping centre. You can pick up a sunflower lanyard from their customer services teams.

Sunflower lanyards are recognised by staff across the rail network in England, Scotland and Wales. Passengers travelling by train can ask for one at many London stations, including Charing Cross, Clapham Junction, Cannon Street, London Bridge, Victoria and Waterloo. Lanyards are available from information points and ticket offices. For people who would rather not wear a lanyard, they also offer a sunflower ticket wallet, which gives you a discreet method of alerting staff as needed.

Alternatively, you can purchase a sunflower lanyard for a small fee from: https://hiddendisabilitiesstore.com. For people who may find wearing a lanyard difficult, they also have other options, such as wristbands, badges and stickers. For people who may find social distancing difficult due to a visual impairment or learning disability, they offer items printed with ‘please give me space’, including cards, badges and lanyards.

Section three: Teens and adulthood

Planning for your child’s future

This section of our handbook covers additional topics of relevance during teens and adulthood. For subjects that are relevant throughout your journey, such as education, health, social care and money matters, preparation for adulthood is covered in section two, towards the end of each chapter.

Thinking about the future can feel overwhelming for parent carers of a child with SEND. Picturing them as an adult can be especially difficult if you do not know how their condition will progress, or how their needs may change.

However, early planning for your child’s future will help you to ensure that they get the support they will need as they reach adulthood and move from children’s to adult services. This is known as ‘transition planning’. Thinking about what your child needs and how this may change as they grow will help you to make sure that their transition goes as smoothly as possible.

The SEND Code of Practice 2015 says preparing for adulthood should cover:

- Higher education and/or employment – this includes exploring different employment options, such as support with becoming employed and help from supported employment agencies.

- Independent living – this means young people having choice, control and freedom over their lives and the support they have, their accommodation and living arrangements, including supported living.

- Participating in society – having friends and supportive relationships, and participating in, and contributing to, the local community.

- Being as healthy as possible in adult life.

For more go to: www.preparingforadulthood.org.uk.

The SEND system and your child

Young people with special educational needs and disabilities (SEND) have a right to additional support with education and training. The purpose of this is to try and level the playing field – so that, as far as possible, they can access the same opportunities as young people without SEND.’ – IPSEA

It was hoped that the changes in the SEN system that were brought in in 2014 would help schools and colleges to be able to meet the majority of young people’s needs through their own SEN support programmes.

As part of this, schools and colleges should include planning for effective transitions as part of their Individual Learning Plans or other record-keeping approaches, as this is key to the future success of young people with SEND. You can find out more about how your child’s school or college deals with transition planning by contacting them.

Whether your young person has an EHC Plan or is supported by their school or college, the aim should be the same: support should help a child’s development so that they achieve the best possible educational and other outcomes in adulthood.

If you or your young person feel that they are struggling or their needs are not being met by the help offered by the school or college’s SEN support programme, you might want to consider requesting an EHC Needs Assessment, which might result in your young person being given an EHC Plan. This brings together all the support a child or young person needs (and is legally entitled to) in a single plan, which can last up until a young person is 25 years of age. The plan sets measurable outcomes. Some will be short-term, while others will look more to the future.

Getting an EHC Plan can be very helpful, as it may enable your child to receive support with their education up to the age of 25, if they need it. You can find out more about EHC Needs Assessments at IPSEA: www.ipsea.org.uk/what-you-need-to-know/ehc-needs-assessments.

Transition planning: what to expect

The Children and Families Act 2014 states that the Local Authority ‘must set out how they will provide the support children and young people will need to prepare for adult life across education, health, social care and other relevant services, such as housing and employment support.

You can find out more about what to expect in the SEND Code of Practice 2015. This is a statutory document about how children and young people with SEND should be supported and what organisations such as local authorities, schools, early years providers, NHS trusts and clinical commissioning groups must comply with (unless there are exceptional reasons not to). To view the SEND Code of Practice go to: www.gov.uk/government/publications/send-code-of-practice-0-to-25.

IPSEA has many resources on transition planning, for young people and parent carers. For more, go to: www.ipsea.org.uk, choose ‘How we help’ from the drop down menu, then click ‘Get support’ and select ‘Young people (aged 16-25)’. You can also find resources on the websites of many national charities, such as Cerebra, the Down’s syndrome association, Mencap, the National Autistic Society and Special Needs Jungle.

Preparing for transition planning

There are plenty of things you can do to get the most out of transition planning in Year 9 and in the future.

General planning

You’ll get much more out of transition planning if you understand some of the options that may be available to your child, so it pays to spend some time finding out what’s on offer.

The focus now is very much on the child, so their views and aspirations should be at the centre of transition planning. It is important, therefore, that you prepare your child so they can contribute as much as is possible. If you can, you should talk to your child about what they would like to do post-16, and also look at their options looking further ahead into adulthood.

If your child has communication or learning difficulties, it is still important to take their views into account. You will find plenty of suggestions to help you get a clearer idea of their hopes and preferences in the next chapter, Involving your child. For example, if your child has a social worker, local Advocacy Services may be able to support them to communicate their ideas to professionals.

You should also consider talking to other parents, school staff or, if your child is at mainstream school, the school Special Educational Needs and Coordinator (SENCO) can give you a range of information.

School staff should be able to tell you about School Leaver Programmes and alternative Key Stage 4 (Year 10 and 11) provision for young people with special educational needs. Schools may have strong links with local further education providers and may provide pupils at Key Stage 4 with work experience programmes that run alongside GCSEs, or are an alternative to them. The school will usually provide careers advice and guidance for students from Year 9 onwards.

Questions to ask yourself

These are some of the questions you might want to ask yourself in preparation for transition planning. You may want to make a note of the relevant ones so you can take them to the annual review meeting.

- Does your child have any thoughts or ideas about what they will do when they leave school? What would you like them to do?

- Has your child got a school record of achievement or equivalent? Looking over this may help you to think about their strengths and future direction.

- What have other children from the school gone on to do?

- What type of social activities does your child enjoy?

- What courses are offered by local colleges and how could your young person be included in their local community?

- Are there courses offered by colleges further from home that may be more appropriate for your young person?

- If you’re thinking about a residential college, how could it be funded?

- If your child would prefer to be working, can you find out about apprenticeships, training and employment schemes that can offer support?

- Will your child live at home with you or move to independent or supported living when they leave school?

- If your child stays at home, will you need a break and if so, how often? How can this be organised and funded?

- What daytime activities are available locally? Would this type of provision suit your child?

- Does your child have health needs? How will health care provision like speech and language therapy, occupational therapy or physiotherapy be arranged?

- Does your child need specialist equipment? If so, who will provide and maintain it?

- What about transport? How will your child get to a college course or apprenticeship and social activities? Will they need support to do so?

- Is your young person eligible for a 16-19 bursary to help with costs like transport, food and equipment?

- What about benefits? Are you and your child getting all the benefits you’re entitled to?

- Do you know how benefits are affected by college or part-time work? Do you know how your entitlement to benefits will change if your child claims benefits as an adult?

‘I knew what I wanted to do from quite an early stage but I needed to know how to get there.’ (Sarah, 18)

First steps: the Year 9 annual review

Parent carers whose child has an Educational Health Care Plan (EHC Plan) will already be familiar with the annual review process at school. However, the Year 9 annual review is slightly different.

The review will cover the same things as before – your child’s EHC Plan will be looked at as usual, the same issues will be considered and the same timescales apply. But the meeting will also focus on transition planning – the beginning of preparations for adulthood – so it will cover a far broader range of subjects than you’ll be used to. It may sound overwhelming, but it is just the first step in a process that will take several years.

For the Year 9 annual review, you and your child will be asked to think about their future and, with the input of the professionals involved with your child, a plan of action will be put together.

If your child has an EHC plan, the transition planning will be written into the plan, so it should be updated at each review, clearly stating the actions that need to be taken, the responsibilities of everyone involved and timescales for all the actions.

Young people are now expected to stay in some form of education or training until they are 18. This is called ‘Raising the Participation Age’ (RPA). This means that it is no longer an option to leave school at 16 and get a full-time job, unless training is also undertaken. So, looking at how your child will continue their post-16 education will be a key part of transition planning.

In addition to further education, vocational training and employment, the transition process should cover your child’s health, leisure activities and where he or she may live as an adult.

In West Sussex, advice and guidance is delivered through the school setting and, when your child reaches their year of transfer (Year 11 upwards), a Senior Planning Coordinator from the Local Authority will also be involved. Young people can also access careers advice from the Careers Team at West Sussex County Council. For more information go to: www.westsussex.gov.uk/education-children-and-families/your-space/work/careers-guidance.

You can also get advice from West Sussex SENDIAS. It has Young Person Advisers, who can support young people up to the age of 25 and help them to think through their options. For more details, contact their helpline: 0330 222 8555, or email: send.ias@westsussex.gov.uk (parent carers) or cyp.sendias@westsussex.gov.uk (children and young people).

You and your child at the centre of planning

The government says disabled young people should have ‘person-centred’ transition plans, which clearly state the support they’ll need once they leave school.

A person-centred approach encourages participation from the young person, parents and everyone attending the transition planning meeting. It also means that information should be brought to the meeting in a way your child can understand, so this may include photographs, symbols or pictures, for example.

Everyone involved in supporting you and your child to prepare for the future should take a person-centred approach to annual reviews. Meetings should be interactive and less formal than traditional annual review meetings to ensure that you and your child are central to the whole process.

What are the aims of a person-centred approach?

- To identify and discuss your child’s strengths – what they’re good at, what people like and admire about them – because whatever they do in the future should build on their strengths.

- To identify what is important to your child (now and in the future) and the help and support they need.

- To identify what needs to happen to keep your child as healthy and safe as possible.

- To identify and discuss what is going well and what isn’t going well from the young person’s and their parents’ perspective, as well as from the perspective of school staff and others attending the meeting.

- To agree actions that support your child to get what is important to them now and in the future, continue what is going well and change what isn’t going well; and try to resolve any ongoing issues.

Tips to help you prepare

- Check if your child’s school is familiar with a person-centred approach to transition review meetings. If they’re not and you’d like them to use this approach, ask the school in advance. If you need help with this you can contact West Sussex SENDIAS for details.

- Some schools are doing preparation with young people before their Year 9 transition review meeting. Ask if this is happening at your child’s school.

- Discuss the topics with your child well in advance of the meeting so you can help them to prepare and you know what they might want to happen next.

- Think about the aims of the person-centred transition review before the meeting so both you and your child come prepared

- It can be helpful to write down the things you want to talk about beforehand, so that you and your child have a checklist of points to cover during the meeting.

What to expect

These are some of the things you should expect in a transition review:

- The head teacher or another member of staff, usually the Special Educational Needs and Coordinator (SENCO), is responsible for ensuring that the Year 9 annual review is organised as a transition-planning meeting. They will send out invitations, sort out times and dates and gather together any relevant reports and advice.

- They must invite: the parents; the young person; your Senior Planning Coordinator from the Local Authority; a representative from social care (social worker); and anyone else the head teacher or the Local Authority suggests.

- Most people invited to the Year 9 annual review don’t have to attend. They can opt to send written reports or advice to the review instead. But in practice they don’t have to do either. A social worker should come if your child’s likely to need social care support after they leave school, or if they’re ‘looked after’ by the Local Authority.

- To prepare for a Year 9 annual review, the Local Authority has a legal obligation to check with social care whether the child is disabled. Children and young people with EHC Plans are considered disabled and are protected under the new legislation. You might not have had contact with social care before, but some support services may be useful to your child as they become an adult, so this might be a good time to ask for a social care assessment for your child if you have not done this before.

- The Year 9 annual review paperwork follows the Department for Education’s ‘Preparing for Adulthood pathways’. You can find out more about this at www.preparingforadulthood.org.uk.

- The school will write up your child’s annual review report. If he or she has an EHC Plan the planning for adulthood may be taken into the plan, as it has a focus on future goals and outcomes.

Key professionals involved in transition planning:

Senior Planning Coordinator: in West Sussex, the Senior Planning Coordinator should be invited to the Year 11 annual review and also the Year 12 and 13 reviews if your young person is leaving school or college.

The Senior Planning Coordinator may attend subsequent reviews as appropriate. They may also stay involved when the young person leaves school to attend further education or training.

Social Care: if a young person is already known to Children’s Services, referrals are made to equivalent teams within Adult Services to see if they will provide support once the young person is over 18.

Young People Advisors: young people can get information about colleges and courses that might be suitable for them from West Sussex SENDIAS’s Young Person Advisors. If your child wants to do a particular college course after they are 16, they can also ask the YP Adviser to look into whether their Year 10 and 11 subject options will give them the qualifications they need. See here for contact details.

Tips for the year 9 annual review

Before the meeting

- Remember that, along with planning for the future, your child’s EHC Plan will be reviewed and may be amended. Read through your child’s EHC Plan to see whether it needs amending. If it does, flag it up with the school and casework officer and ask them to get any assessments or advice that supports the amendment before the annual review meeting.

- If you need advice, contact West Sussex SENDIAS on their helpline or email them.

- If your child hasn’t had an assessment from an Educational Psychologist (EP) in the past couple of years, it might be worth requesting one before the meeting to make sure all their special educational needs have been clearly identified. Make sure significant needs like speech and language therapy don’t slip out of the EHC Plan. Changes to the EHC Plan are decided by the Local Authority, but you have the right to appeal them.

- Identify who your child’s Senior Planning Coordinator is and, if they’re currently receive social care, ask who will support your child’s transition to adult social care. It pays to establish a relationship early on so you can ask for support if you need it later.

- If you think there’s a professional involved with your child who should be invited to the meeting, make sure the head teacher or SENCO knows well in advance so there’s time to invite them to submit information or attend the meeting.

- For some of us, although we want our children to continue learning, it feels unrealistic to talk about career choices. Our focus is more on the need to arrange support for our child in the future, such as short breaks or supported living. If this is the case, make sure someone from social care has been invited to the meeting and will be attending.

- In theory, reports about your child should be circulated to everyone who’s planning to attend at least two weeks in advance. In practice, this hardly ever happens, so it’s worth asking the school to chase the professionals involved or do so yourself.

- We suggest you take someone with you to support you too, such as a friend or family member, or you could ask for a representative from West Sussex SENDIAS to come with you. If your child is coming to the meeting, is there someone they’d like to have there to support them, like a friend, advocate or mentor?

- Make sure you inform the school in advance if you intend to bring someone with you to support you or your child.

- Meetings can feel difficult so you may find our fact sheet ‘Meetings and paperwork’ helpful. All our fact sheets are available to download free on our website: www.reachingfamilies.org.uk/factsheets.html.

- West Sussex SENDIAS has also produced an information leaflet to help parent carers with annual reviews. You can find a copy on the resources section of their website: https://westsussexsendias.org.

At the meeting

- Be aware that people at the meeting may not have any previous knowledge of your child, so you may need to fill them in.

- Ask what each of the services represented at the meeting can offer and what the planning process will be.

- Be clear about your child’s strengths and the support they need.

After the meeting

Annual reviews for EHC Plans continue until the young person leaves school. Transition planning will be discussed at future annual reviews and after each one the EHC Plan will be added to and changed as needed.

The school must prepare a report on the annual review and send copies of this to: the parents; the Local Authority; the head teacher; anyone else who attended or provided advice and/or reports for the review; plus anyone else that the Local Authority feels is appropriate.

If you disagree with the content of an EHC Plan, you have the right to appeal to the First-Tier Tribunal (Special Educational Needs and Disability). Until recently, appeals could only deal with education matters. Since April 2018, the First-Tier Tribunal (SEND) has been conducting a national trial where its powers were expanded so that health and social care sections of the EHC Plan could also be considered as part of an appeal. At the time of writing, the trial has once more been extended, but there has been no decision on whether this will be made permanent.

It’s also important to note that, despite this change, an appeal going to tribunal must always have an educational component. If your appeal relates only to health or social care you should use disagreement resolution and/or mediation and then use the relevant complaints procedures if necessary.

You can find more on tribunals by visting this section. If you need help with an appeal, you can contact West Sussex SENDIAS. You can also ask for advice from IPSEA. Some national charities for specific disabilities and conditions also offer advice and support on these issues.

Constantly evolving

What’s agreed in the Year 9 annual review is the beginning of a long journey and decisions are not cast in stone. While some young people know what they want to do after school, for others it will be a matter of waiting to see how they get on. It’s not always possible to decide early on and new options may present themselves further down the line.

Some of us have also been surprised by how much our children have flourished and grown over the years and have been able to consider a much wider range of opportunities than we would have thought possible when they were younger.

Some young people with more complex needs will keep an EHC Plan up to 25. The Senior Planning Coordinator will help to ensure that the EHC Plan is updated and relevant to the support they need at college. This should include active input from you and your child.

Information resources

There are a range of organisations offering information, advice and support on transitioning to adulthood. Locally, as well SENDIAS, you can also check our website, as we offer regular training workshops for parent carers on a variety of topics. For more, go to: www.reachingfamilies.org.uk/training.html.

Nationally, many organisations offer information and advice on preparing for adulthood. Further contact details for organisations listed below can be found in our National Directory:

- The British Institute of Learning Disabilities (BILD) has an easy-read section for people with learning disabilities and resources for families. See: www.bild.org.uk.

- Cerebra has fact sheets and a parent guide to transition. Go to the ‘help and advice’ section of their website for more information.

- The Choice Forum is an online community for people with learning disabilities and their families where all sorts of topics can be discussed.

- Contact has resources to help families during transition. Go to their website and choose ‘help for Families’ then click on ‘information and advice’ and select the ‘preparing for adulthood’ button.

- The Council for Disabled Children created the ‘Transition Information Network’, providing online resources, publications and events. It also publishes a free magazine entitled My Future Choices. Go to: https://councilfordisabledchildren.org.uk/transition-information-network. You can also access their resource hub, which has fact sheets, toolkits, and information about case law and legislation updates.

- Dimensions works with people with autism, challenging behaviour, complex needs and learning disabilities. The website has resources for families and young people, including a transition guide and other easy read guides: www.dimensions-uk.org/what-we-do/transition.

- The Down’s Syndrome Association has a dedicated section to transition on their website. Go to ‘Life’s journey’ then click on ‘children, families and education’ and scroll down to ‘transition to independence’ which includes an easy-read section, ‘Listen to Me’.

- The Foundation for People with Learning Disabilities has a guide entitled Thinking Ahead, to help families to plan for transition. You can download it at: www.mentalhealth.org.uk/learning-disabilities/publications/thinking-ahead-planning-guide-families.

- IPSEA has advice and model letters on SEND law and education. Go to ‘get support’ and click on their section for young people aged 16 to 25. There is also specific advice on transport to school or college for over 16s.

- Mencap has a section on transition to adulthood at: www.mencap.org.uk/advice-and-support/children-and-young-people/education-support/transition-adult-services, with links to other websites such as the British Association for Supported Employment (www.base-uk.org) and the Care and Support Alliance (www.careandsupportalliance.com).

- The National Autistic Society has comprehensive transition advice and a free transition support service for young people with autism aged 14+. Go to: www.autism.org.uk/advice-and-guidance/topics/transitions/england.

- The National Institute for Health and Care Excellence (NICE) guidelines on transition to adult health and care services at: www.nice.org.uk/guidance/ng43/evidence/full-guideline-pdf-2360240173.

- NHS website has a section on transition to adult health and care services, with useful information and links. Go to: www.nhs.uk/conditions/social-care-and-support/transition-planning-disabled-young-people.

- Preparing for Adulthood although designed to support local authorities, families may also find it useful: www.preparingforadulthood.org.uk.

- Scope has a section on its website that offers transition advice to parent carers and teachers. It also has an online community, where members can get support and advice. For more, go to: www.scope.org.uk/transition.

- SOS SEN has information and runs workshops and events on post-16 options. You can find out more at: www.sossen.org.uk.

- Together for Short Lives works with families of children and young people with life-shortening and life-threatening conditions. It has a transition to adult services hub, which can be accessed at: www.togetherforshortlives.org.uk/changing-lives/developing-services/transition-adult-services.

Section three: Teens and adulthood

Involving your child

Parent carers are used to making decisions on behalf of their child to try to ensure that their needs are met. Over the years, you will have had to make many important choices for your child and will probably have felt comfortable doing so. This may have involved fighting hard to secure the additional support or specialist services that your child needs.

It is a huge responsibility and, even though your child is now moving into adulthood, the pressure to do the right thing by them remains. For some parent carers, therefore, the idea of involving their young person in decision-making may feel quite daunting, especially as we all want the best for our children and don’t want them to make choices that they may later regret.

However, all young people know what they like and don’t like and they may have their own strong opinions about their future. It can be hard to put aside our own hopes and expectations for them, but it’s important to remember that plans that take their wishes and feelings into account are more likely to work.

Although there may be a huge variation in our children’s ability to make decisions, the information in this chapter is relevant to all families, including parents who may feel that their teenager has a limited ability to express their views. Most young people can show both positive and negative preferences to a person, a place or an activity and this ability can be invaluable when making decisions.

Some young people may use sign-language, visual symbols or other augmented or alternative forms of communication, but for simplicity, the terms ‘she tells us’ or ‘he says’ will be used to cover all methods of communication. In our experience, a young person’s views are likely to be given greater weight if they communicate directly with those involved in the decision-making process, but they will need your support to do so.

This chapter will suggest ways in which you can involve your child in the decision-making process, as well as making sure his or her wishes are heard during transition planning. It also provides information on some of the rights you and your child have in the eyes of the law.

Choices for our children

Every parent wants their child to make good decisions that lead to them being happy and fulfilled in life. One of the things that concerns many parent carers about encouraging young people to have a say is that we want to make sure that they understand their options and what the outcomes of each choice may be.

However, the views of children and young people can be overlooked. This is especially true for disabled children who, after years of decisions being made for them, may feel that they don’t have a voice or that their opinion is not as important as those of other people.

‘You get talked about by everyone: “where shall we sit him... what time does he go to bed?” in front of you. You really believe you aren’t as much of a person as everyone else. You’d never think of having a say.’ (Jack, 16)

The balance between involving your child and fulfilling your role as a parent and protecting their best interests can seem a difficult one. But at 16, they’ll legally have the right to make their own decisions, according to their ‘mental capacity’ and at 18 they’re legally adults. It’s part of our job as parents to help them prepare for this during their teens.

Worries about their vulnerability as adults can stop us encouraging young people to get used to making some choices and decisions, but we will make them less vulnerable if we teach them that they have a right to be listened to and that their views should be taken seriously.

What the law says

It is a good idea to familiarise yourself with the laws protecting your child’s rights around decision-making. These are: The Mental Capacity Act 2005; The Equality Act 2010; The Human Rights Act 1998; and The United Nations Convention on the Rights of Persons with Disabilities 2008.

The Mental Capacity Act 2005

Parents have responsibility for decision-making for their children but, once they reach 16 years of age, the law says young people have the right to make decisions for themselves, wherever possible. The Mental Capacity Act 2005 covers a person’s ‘mental capacity’ – in other words their ability to make decisions for themselves and what to do if it is established that a person does not have mental capacity.

The act aims to protect and empower people who may not be able to make their own decisions. It also helps parents or carers understand how and when they can act on behalf of someone who may not be able to make decisions for themselves. It outlines how to decide if someone has capacity to make a decision and, if it is felt that they are unable to do so, it explains how decisions should be made for them and who should be involved in this.

The Mental Capacity Act covers major decisions including: property and financial affairs; healthcare and treatment; where a person lives; and decisions about everyday life such as personal care. Some activities or decisions need more capacity than others, but very few people are unable to make any decisions, even those with severe or profound and multiple learning disabilities and high support needs.

If people have ‘mental capacity’, they’ve the right to make their own decisions, whether others agree with those choices or not. This means that although you may disagree with a choice your young person has made, you cannot use this to argue that he or she does not have capacity.

If someone doesn’t have the capacity to make a particular decision for his or herself, the Mental Capacity Act makes it clear who can act on their behalf and how they should go about it. This is not necessarily you as their parent, although the act says that parents and family should be involved. For example, you might become their appointee to look after their welfare benefits, but a healthcare professional might be the decision-maker for them over a health issue.

The law also states that all possible steps must be taken to help people make decisions about their lives. It explains how capacity should be assessed to decide whether a person is able to make a particular decision at a particular time, and provides a Code of Practice for someone acting on their behalf. Decisions made for the person must be in their best interests and should place the least restriction on their basic rights and freedoms.

To find out more about the Mental Capacity Act, visit www.gov.uk/become-deputy. To look at the Code of Practice go to: www.gov.uk/government/publications/mental-capacity-act-code-of-practice.

Several other organisations can also help. Hft (previously Home Farm Trust) has produced a guide for carers called Using the Mental Capacity Act, which is available on their website: www.hft.org.uk, or call 0117 906 1700 and ask for a copy to be sent to you. Mencap has a resource pack aimed at parents of young people with more severe learning disabilities, which you can download free from www.mencap.org.uk or call 0808 808 1111 and ask for a copy. The Foundation for People with Learning Disabilities’ guide, Thinking Ahead also covers the Mental Capacity Act.

Help is also available from the charity POhWER, a charity that provides support and advocacy services with regard to mental capacity in West Sussex. See: www.pohwer.net/in-your-area/where-you-live/west-sussex or call 0300 456 2370.

The Equality Act 2010 and Human Rights Act 1998

These two acts support our children’s rights to respect, choice and independence in their adult lives. The Equality Act 2010 aims to prevent discrimination on the grounds of age, disability, gender, race, religion, sexual orientation or transgender status. It replaces the Disability Discrimination Act 1995 and covers employment, education, public and private services, transport and more.

The Human Rights Act 1998 brought the European Convention on Human rights into UK law. Its key principles include the right to liberty, a family life and freedom of expression. To find out more, visit the Equality and Human Rights Commission (EHRC) website: www.equalityhumanrights.com.

The Equality Advisory Support Service (EASS) also has an advice and guidance section on their website at: www.equalityadvisoryservice.com. You can also call their helpline on 0808 800 0082.

Helping your child to make choices

‘The consultant spoke to me, not my carer, and I told him the problems I had with the medication, and together we sorted it out.’ (Sarah, 18)

Most of our young people will be asked to make decisions about what they want to do and the sort of help they need as they move into adulthood. Some of our young people will be able to make these decisions for themselves, while others may need considerable support, especially for decisions with far-reaching consequences.

Involving children in decision-making is much easier if they are already used to making choices and know that both they and their views matter.

You may find that you have to remind others dealing with your child that their views count. Whenever other people are communicating with your child make sure that they are given the chance to express their own opinions and preferences and that these are taken seriously by the other person. If your child knows that their views are valued and important in everyday life, this will build their confidence and help them to make their voice heard in important meetings.

‘It’s hard to make choices... if people ignore you and don’t even try to find out what you want. They talk about you as if you aren’t there.’ (Andrea, 17)

Building decision-making skills

You can build your child’s confidence to help them make big decisions by giving them plenty of practise making smaller, everyday ones. As a parent, you can create opportunities for your child to practise ‘having a say’.

It can be useful to break things down into smaller steps. For instance, to help your young person to choose from a long menu it might be more manageable if certain items are ruled out, so you might say, “You’re not keen on pasta.” Choices about clothes to buy can be made easier if you give extra information, “Laces are tricky.” If your young person is choosing what to wear you can help, “It will be very cold today.”

Similarly, when it comes to transition the first step towards deciding which further education course to choose might be, “What full-time courses are running?” If the choices still seem confusing to your young person, you can help them by narrowing the options further.

‘Dan couldn’t decide which DVD to watch so I said, “Would it help if I gave you three to choose from?”’

If you do limit options, be careful not to do so for your convenience, or present them so the young person chooses what is going to please you or others, rather than themselves. Remember, it’s not just what you say, but how you say it and what your body language suggests.

‘Alice picks up on the intonation of my voice and even the order I present choices in. A lot of her speech is echolalic so I don’t offer what I think will be her preferred choice last. It’s about sounding interested without cueing her decision.’

Talking about the practical things children need – like someone to keep an eye on them, or a gluten-free diet because of their allergies – can be a helpful way to practise the decision-making process because it shows them the thinking behind making choices. This is a useful skill to learn for negotiating in more formal review meetings.

It is also important to check that your child has really understood what you are discussing so try to find ways to practise this.

‘I say, “Can you tell me what you think is going to happen?” or, “Could you tell Dad what we talked about?” That way Michael has the job of explaining it to someone else.’

Tips for building decision-making skills

- Present a choice broken down into small, manageable steps.

- Check the choice has been understood.

- Group different options together by an important common factor. So, for example, if you’re planning a day out, you might group several food options together or group together options for getting there.

- Remember to congratulate the young person on successful decision-making. Saying, “That’s a good choice!” conveys your pride in their ability to choose, as well as confirming that a decision has been made.

Putting young people in the picture

It can be hard for young people to imagine what it might be like to do something they haven’t tried before, whether it’s something small like a new food, or something bigger like a work placement. Pictures and photographs can help them. For instance, looking through magazines could help them decide what haircut might suit them or what colour scheme they’d prefer for their room. But the best experience, of course, is the real thing:

‘Jack wanted to paint his room red. I asked, “What sort of red?” and he said, ”Like Christmas.” I took him to a friend’s house because her sitting room is red. He said, “It’s very hot and busy. I want a quiet room.” So we looked at the charts again and abandoned red!’

This parent was prepared to go along with her son’s decision to paint his room red. When your young person is making decisions it is important to remember and accept their choices even if it is not the decision you had hoped they would make.

Dealing with anxieties

‘I thought we’d talked about everything, but still David refused to stay for the sleepover. I asked what else there was to worry about and he asked how he would know it was his turn in the bathroom. It just hadn’t occurred to me. Once I knew, I could help him sort it out, but it was ages before he told me.’

Sometimes, our own worries are communicated to the young person without us realising. For example, our fears about their safety may contribute to a child’s anxieties about new situations.

‘Chloe’s friends all hang about in town Saturdays and, of course, Alice wants to go. I was really worried about what would happen if she got separated from the crowd. Could I trust her sister to look out for her? I kept saying what if this... what if that... In the end I realised the arguments were making us both miserable and she said I was treating her like a baby. We got her a mobile and put in our home number. She promised to ring me if she got lost and we’ve practised who is safe to ask for help. I have to start trusting her because she starts college next year. Of course I still worry, but I try not to let it show.’

Tips for coping with worries

- Unpicking worries can take time, especially if it’s something that doesn’t make much sense to us. It’s important to take all worries seriously; they arouse strong feelings and can get in the way of trying new things or making choices.

- Consider the potential risks and build in safeguards. In this way the young person can take another step towards independence.

Under pressure

Young people rarely make decisions they’re happy with if they feel rushed, under pressure, or they are unable to give their whole attention. Sometimes they’re too interested in the TV, bored, tired, or feeling unwell. Some places aren’t good either; perhaps the shop’s too crowded, the sales staff too persistent or the music too loud. If it’s hard to hear yourself think, a young person may choose anything just so they can move on.

‘Tom came back with a CD he didn’t want. The shop didn’t have more until Tuesday but the man said, “This one is just as good”. Of course it wasn’t, it didn’t have the right tracks and Tom was very cross. He seems very able, but we hadn’t appreciated that he hadn’t learned to say, “No thank you, I only want to buy…” After that we did some role play and practised being assertive. I remember we had a lot of fun taking turns doing the hard sell and standing firm.’

Choices as a family

Making decisions as a family can help a young person to learn about fairness, considering the views and feelings of others, and living with majority decisions. Finding out that it’s fair for everyone to have a chance to say what they think, that it’s okay to have different ideas and to change your mind as a result of hearing what others think is useful learning. It’s also helpful to discover that sometimes you don’t get your choice and have to compromise. These realities can be hard to accept, but it makes more sense to young people if pros and cons are discussed openly.

‘Mealtimes, around the table with everyone, that’s when we talk about big things like holidays. My priority is not too hot, Sam always wants a sandy beach and Jane wants her own tent this year. I needed to know that if she was to have a tent, she could take responsibility for her own space. We agreed that if she kept her room tidy from now on, she would have a tent of her own. Later we sat down and thought about keeping her room tidy, dirty washing, hoovering and finding a home for all the cuddlies.’

Tips for talking it through

- Negotiate a good time and place to think about important things.

- Remember, wanting more time to think about things is a decision as well.

- Make sure that you do plenty of ‘thinking out loud’ to show how you make decisions and solve problems.

- Remember, the consequences of a choice can be better understood by talking it through carefully. It’s important that your child understands that having the right to choose also comes with responsibilities.

Getting outside help

Many children choose to talk over serious decisions with their parents or other adults they are close to, but sometimes they may prefer to talk with someone who is outside their circle of family and friends. In some cases, they may also prefer it if this person is the one to support them in meetings.

The Advocacy Service can help disabled young people be heard. Advocates can go to meetings with a young person, help them to make a complaint or get legal advice. For more, go to: www.westsussex.gov.uk/education-children-and-families/your-space/life/advocacy or call: 0330 222 8686.

For young people with mental health challenges, MIND have advocacy workers who can provide support to young people living in West Sussex. Call: 01273 666950 or go to: www.mindcharity.co.uk/services/services-in-west-sussex/advocacy.

‘There were lots of things I didn’t like, and I kept getting into trouble. Mum kept telling them but nothing changed. Sometimes I shouted at Mum, “You didn’t tell them!” Then she said, “Well, you tell them yourself.” A lady came and helped me think how to say what was going on and she came with me in case I got stuck. Then everyone listened. At the end of the meeting [my teacher] said she would tell the other teachers to read my plan and do it and I said I would sit away from the noisy boys. My mum said I did a good job.’ (Ben, 16)

Involving young people in transition planning

It is worth taking time to prepare for review meetings. Your young person may find it helpful to look at some of the resources that we linked to in the previous chapter – the easy-read guides may be a useful starting point for discussion without feeling overwhelming.

However, it’s worth remembering that your child may need a period of time to look at the information and to think things through, so make sure you plan sufficient time for this rather than leaving it until the week of their review. Your child will be best able to contribute if he or she has been given sufficient time to consider their wishes and feelings, go through their options and prepare what they want to say.

It’s also worth doing this as some professionals struggle with empowering young people to make decisions on their own and also with taking into account their parents’ views. And sometimes they don’t attempt to find out what young people who have got complex communication needs are thinking.

Your child may be the star of the show at a person-centred transition review, but if they have a more traditional review, they may not be invited to all of it. Even if they won’t be there though, you can still find out their views and put across how they feel at the meeting. We assume below that they will be present – but you’ll find many of the points are still relevant if they’re not there for the whole meeting and you’re expressing their views for them.

Helping your child to plan for a meeting doesn’t have to happen formally. Sometimes it’s more productive to do five or ten minutes thinking a day over several weeks, rather than attempting longer sessions. And it’s always more manageable to ask one question at a time.

‘Oliver’s really good at the whole education side of things, because he likes learning, so he’s interested in talking about what he wants to do next, what he’d like to try.’

If it’s possible, avoid closed questions such as, ‘Do you like that?’ as it invites only a ‘yes’ or ‘no’ answer. It is better to ask open questions like, ‘What do you like about that?’ as this will allow your child to give a fuller response.

Repeat back what you think your child is telling you, to check that you’ve understood them. Avoid assuming what’s important to them. If it’s not easy to be sure what they mean, acknowledge you’ve got lost and start again rather than trying to keep going when you’ve lost the thread.

Be patient and resist the urge to fill silences or finish sentences. Let your child know there are no right or wrong answers and you won’t be cross with whatever they want to say.

‘Sometimes I’m not sure what Alice means, so I say, “Did you mean this, that, or something else?” and I sign the choices. She uses the sign for ‘different’ for something else.’

Of course talking and writing are not the only means of communication. If a child can’t speak, we should not assume that they don’t have views and preferences. Encourage your child to choose how they want to record their views. Think about using photographs, drawings, audio or DVDs as well as observation to ‘catch and record’ their wishes and feelings. Simple questions in word, sign, symbol or pictures can help many young people make sense of things and make their contribution.

Tips to help you prepare

- Check your child knows what the meeting is about, who will be there and what sort of things they may say. If you aren’t sure yourself, you’ll need to find out.

- Make time to talk with your child about any changes in their circumstances, their needs and your needs.

- Take a fresh look at their EHC Plan as there may be things that need updating.

- It is easy to unwittingly build value judgements into questions by asking your child ‘why?’ Try instead to say things like ‘tell me more about that.’ Ask more open questions and repeat their answer to check you’ve understood the point they are making.

- As the meeting gets closer, make sure copies of your child’s views, whatever the format, are circulated to everyone attending the meeting, along with your advice and those of others.

- Find out if your child wants to attend all or part of the meeting, or if they would like another person to present their views and who they’d like that to be. Would they like to invite a friend or an advocate?

Setting ground rules for the meeting

‘One of the support staff said, “Chris, how can you say that?” and he just clammed up and didn’t say any more.’

Meetings are more successful when there are clear arrangements in place that take account of a young person’s particular needs. Check with the school what the ground rules are and be prepared to make your own suggestions and ask for changes if you think certain things won’t work.

Ground rules before the meeting could include:

- A meeting place that’s accessible and familiar.

- A meeting time when the young person’s best able to contribute.

- Clarity over whether your child will be there for some or all of the meeting and, if they’re only there for a part of it, which part it is.

- The opportunity for your child to choose where they sit.

- If your child usually needs someone to interpret for them, clarify with them and the school who that will be before the meeting. It’s confusing if everyone tries to help.

- Agreeing what will happen if the young person wants to leave the meeting or take a break.

- Getting the meeting recorded or someone nominated to take notes on your child’s behalf if that’s what they want.

- Checking if there’s anyone the young person wants to be present for only part of the meeting.

Ground rules at the meeting could include:

- Introducing your child to anyone they don’t know at the meeting and explaining why they’re there.

- A reminder that it’s your child’s meeting and what needs to be discussed should be central to their future.

- Agreeing not to challenge what he or she says, interrupt them, or finish their sentences for them.

- Checking your child feels their questions have been answered and, if not, giving them the opportunity to ask again.

- Recapping what each person has agreed to do after the meeting.

- Checking your child understands what has been agreed and what will happen next.

‘The Casework Officer said, “I’m here to write down what everyone thinks should happen next.’

After the meeting

- Check out how your child feels. Maybe he or she wants to go over what happened. Perhaps there is something they would like done differently next time.

- Make sure your child gets a copy of what was agreed in a format that is accessible to them.

- Suggest your child keeps their notes, along with the minutes and recommendations, in case they want to look at them again.

- If your child has clear views about important matters, make sure they’re reflected in amendments to their EHC Plan.

- If it hasn’t been possible to act on your child’s wishes, find out who will explain the reasons for the decision.

- Encourage your child to be involved in putting recommendations into practice.

What if things go wrong?

However much groundwork you have both done, however well-reasoned the young person’s arguments, and however well supported your child has been, it’s possible your child might not get what they want.

However, decisions with long term implications can and will be reviewed, and many decisions can be challenged. If you’re unhappy with the decisions that have been made, this might be the time to get some professional advice from local or national organisations, see here for further information.

Section three: Teens and adulthood

Growing up and relationships

Part of growing up is about developing good self-esteem, a positive body image, and the confidence to be happy with who you are as a person, as well as developing a sense of responsibility for your own actions.

Building self-esteem

Building self-esteem so that your young person feels happy and confident is extremely important for all children, and especially so for those with SEND. You can help them in the following ways:

- Celebrate their successes, no matter how small. Make sure your young person knows how proud you are of everything they do.

- Make sure you compliment them every day – this could be something as simple as telling them they’ve made a good choice.

- Remind them of all the things they are good at and, if things do go wrong, reassure them that everyone makes mistakes occasionally.

- Feeling that their opinions are valuable and respected will help your young person to be able to speak up, which will help when they have meetings with professionals.

- Encourage your young person to make their own decisions, see here for more on this. You can help them to do so, but remember to respect their choices if they are not what you were hoping they would decide on!

- Encourage your young person to be assertive with others. Teach them how to deal with people who ask them questions about their disability that they may not want to answer. For example, tell them that it is okay to change the subject if they do not feel comfortable.

- Remind your child of the fact that everyone is different and that this is OK. It can be really helpful to find positive role models for your child to relate to. Look out for news articles and photos that you can share with them.

- Encourage your child to keep clean, use deodorant, wash their hair regularly and so on.

- Like all teens, your young person may want to experiment with their clothes, hairs and make up. Help them to try out different looks and encourage them to find their own style.

- If your child is self-conscious about certain aspects of their appearance, don’t dismiss their concerns. Listen to them and support them by helping them to talk through their feelings. It’s important to tell them that everyone has things they do and don’t like about themselves. If you can get them to talk about their good points to focus on some positive aspects this can help them to feel more confident about their appearance.

Puberty and sex education

Growing up is also about having relationships and becoming a confident adult who may have a range of close friendships and sexual partners.

Some parents may find talking to their children about puberty and sex slightly awkward. However, for all children and young people, regardless of whether or not they have a disability or special needs, being open and honest from an early age is important. Puberty and the swirl of confusing adolescent emotions that go with it is far easier to cope with if a young person knows what is happening to their body and what changes to expect.

What does my child need to know?

It’s a good idea to start talking to your child about how their body works and grows from an early age and to gradually build on their knowledge as they get older. If they ask questions, be honest with them and factual, but don’t feel like you need to go into too much detail in one go, which can be overwhelming. Building a child’s knowledge slowly and at their pace will be far less scary than having to sit down and have the ‘big talk’ about sex.

You may also find it helpful to contact the FPA (formerly the Family Planning Association), which produces a range of resources to help parents overcome difficulties talking about boundaries, puberty and sexual issues with their children. The site also has advice and easy-read resources for young people with learning disabilities. For more information go to: www.fpa.org.uk.

What words should you use?

Use words your child is familiar with and gradually introduce the correct medical names for the genitals and other body parts. Even if your child chooses to use their own words, it’s helpful if they can understand and use the correct medical terms in certain situations.

This is especially important if your child is going to be in hospital on their own. They may be embarrassed if they can’t explain a problem to a doctor or nurse because they don’t know the correct words. If your child needs personal or intimate care, consistency in the language used to describe the genitals and other areas of the body is also very important.

If your child relies on the help of support workers when going to the toilet, or if they are used to undressing regularly for doctors or therapists, the concept of parts of the body being ‘private’ may also need reinforcing.

Puberty

Young people with special needs go through puberty like any other child. Although puberty may be early for some and delayed for others, it is a biological and emotional process that has to happen. As far as possible, all children and young people need to be prepared for the changes that will happen to their body before they take place. Every young person is different, but here are a few ideas that you might want to consider talking about:

- the name and function of the sex organs

- what changes to expect at puberty

- how society expects people to behave in public

- keeping safe from exploitation and abuse

- relationships and responsibility

- preventing unplanned pregnancy and sexually-transmitted infections (STIs)

Schools cover puberty, sex and relationships in science lessons and also as part of ‘PSHE’ (Personal, Social and Health Education), and you may want to talk to a teacher at school about your child’s sex education programme, especially if you feel they might be anxious or if you feel they might benefit from a chat at home beforehand.

Your child may need some points to be talked through further at home afterwards. They might have worries relating to their medical condition or disability. If possible, you need to be able to allay their fears. If you don’t have the answers, you could contact local or national organisations that support disabled children. If there is a specific organisation for your child’s condition they may have information that’s more tailored to your child.

Periods

Girls can have periods from around the age of nine, although it’s also normal if periods do not start until a girl is in their teens.

Make sure that you have covered menstruation well before the first period, so that your daughter knows it is a normal process and nothing to be worried about. Explain that her period will stop after a few days and that it will happen again. Once her periods have started, it’s a good idea to mark it in a diary or on an online app so that she knows roughly when it will happen again.

You should also give her information about pads and tampons so she knows what they are for and how they are used. It is a good idea to buy some and take them out of the wrappings. Usually, pads are quite easy for a girl to put in place herself, but sometimes she may need help because of the nature of her special needs or disability. Period pants are another alternative to consider. Although they are expensive initially, they are washable and your young person may prefer them to tampons or towels, particularly if they have sensory issues. Washable pads are another option, along with menstrual cups, which come in a range of brands and sizes.

Emphasise the importance of personal hygiene and cleanliness during menstruation. Make sure that your daughter knows that periods are private and she should not talk about them with everyone, but that it is OK to talk to you, a teacher at school, a nurse or a friend if she wants to or has any questions.

Personal care

Children and young people who need intimate personal care may find it awkward or embarrassing as they get older and go through puberty. It’s important, to ensure that you or any carers who provide personal care are respectful and sensitive towards your young person. You can do this by:

- Giving your young person a say in their personal care plan.

- Making sure that the care plan is assessed and updated as and when your child’s needs change.

- Finding out if there are ways that your young person could manage their intimate care needs themselves, using aids or equipment.

- Making sure that the number of people who provide intimate care to your young person is kept to a minimum.

- Asking your young person before you provide intimate care and ensuring that they know why it is needed.

- Keeping things consistent – ensure that anyone who provides intimate care to your young person uses the same language for parts of the body and functions.

Masturbation

Exploring your body and getting to know what feels good is natural as you grow up, but for young people with disabilities, there may be issues with opportunities and privacy. As for any adolescent, your young person’s right to privacy should be respected. Try to knock and wait before going in to a bedroom or bathroom and ensure that other carers, including support workers do so, too.

Some young people with learning disabilities may need extra support to understand that while masturbation is okay in private, there are times and places where it is not acceptable. As mentioned in ‘Useful resources’, there are a number of leaflets and books available, including some easy read books that will help you discuss things with your young person in a way that is appropriate for them.

Sexual relationships

In the past, it was commonly believed that young people with disabilities did not have sexual feelings or needs and that if their disabilities were complex that they did not have the capability to have sex. They do, and part of helping your young person on their journey to adulthood is to acknowledge this so that you can give them the knowledge they need to form safe, loving relationships.

Many parents worry that teaching their young person about sex will encourage them to become sexually active at an earlier age. However, children who have received sound sex education are more likely to wait and become sexually active later than their peers. Avoiding talking about sex will not make your child’s sexual development, feelings and desires go away, but it may leave him or her feeling confused and fearful, especially if they misunderstand what they’ve learned or hear wrong information from peers.

This is especially true today, with so many teenagers having ready access to the internet – it is far better that your child learns about sex in a safe, secure way by talking to you, than by someone at school showing them inappropriate images or videos. It is great if your young person feels that they can talk about their feelings and needs with you. Not only will this give them the support they need to deal with difficult adolescent feelings, it will also give them the security to discuss any anxieties they may have about anything that makes them feel uncomfortable.

As a parent, you will play a vital role in supporting your young person through adolescence so they can become confident, knowledgeable adults who can make good, informed choices. Being open and honest when you talk about sex is really important, as is ensuring that your young person has access to good sex education and health care.

Locally, your young person can get information, advice and support on sexual health, relationships and related issues from their GP. They can also use West Sussex Sexual Health Service which has information on a huge range of topics such as contraception, health screening, pregnancy as well as information on sexual health clinics running across the county. Go to: www.sexualhealthwestsussex.nhs.uk. My Sister’s House Sexual Health Clinic also offers a regular sexual health clinic. For more information go to: www.mysistershouse.info.

When and how to talk about sexual relationships

- Talk to your child from an early age, certainly before puberty.

- Chatting casually and openly while you do other things will also help children to feel that sex is normal. You may find that a TV programme or a book triggers a conversation, for example.

- Answer questions and don’t be afraid to say, “I don’t know. Let’s look it up together.”

- Answer the question they’ve asked. If they want to know more, tell them, but don’t overcomplicate the issue and don’t sit them down for a ‘big talk’ as it can be overwhelming to try to absorb all the information at once.

- Talk to your child about mutual love and respect.

- Make sure they are aware of all the different types of relationships and the fact that same-sex relationships are as common for disabled people as non-disabled people.

- Share your own beliefs and attitudes but be prepared to listen to your child, too. They may have different views on things.

Protecting your child from abuse

There are a number of reasons why disabled children and young people can be more vulnerable to abuse. Their learning disabilities may mean that they have less understanding about private parts of the body, particularly if they rely on intimate care or have frequent medical examinations where they need to undress. Or they may have communication difficulties, which affect their ability to speak out about abuse. So the need for sex education and an understanding of appropriate touch is essential.

Try to make sure that your child understands the difference between wanting to be touched and kissed and being made to do something that makes them feel scared or uncomfortable.

Teach them that their body belongs to them and that it is not okay for someone to touch them if they do not want them to. Be sure that your child knows that they can talk to you or someone else they trust about anything, no matter how awful or embarrassing it feels. If your child uses signs or symbols, be sure to introduce ones that allow them to communicate with you or others about their body and feelings.

However, it is important to keep these risks in perspective. Give your child the confidence, knowledge and skills to protect themselves, without over-protecting them or stopping them from experiencing all the good things that life has to offer.

Useful resources

There are a number of good resources to help you explain changes during puberty to a child with learning disabilities. Talking together about growing up: a workbook for parents of children with learning disabilities by Lorna Scott and Lesley Kerr-Edwards is available from FPA.

Let’s Talk about Sex by Robie Harris and Michael Emberley (Walker Books) covers all aspects of growing up.

Contact’s Growing up, sex and relationships booklet also goes into more detail about puberty, relationships and other issues around growing up. It also has a variety of useful contacts to other organisations that may be able to help you.

There are also a number of books written for children and young people with additional needs that explain many topics around this subject. Jessica Kingsley Publishers produce numerous titles relating to disabilities and special educational needs, including a series of easy to read picture books. They cover a vast range of topics for children and young people including puberty, gender identity, masturbation and sex, as well as a guide to using public toilets safely. They also publish The Autism-Friendly Guide to Periods by Robyn Steward, The Growing Up Guide for Boys and The Growing up Guide for Girls, which are geared to young people on the autistic spectrum, as well as books written by young people with autistic spectrum conditions. For more go to: www.jkp.com.

Books Beyond Words produces easy read booklets for people with learning disabilities to help them to understand relationships and health issues. Go to: www.booksbeyondwords.co.uk.

Scope has information for people with learning disabilities. Go to: www.scope.org.uk and search for ‘disability and getting ready to have sex.’

BILD (British Institute of Learning Disabilities) has information and resources for parents and young people covering everything from friendships to relationships and sex. They also have easy read information. For more go to: www.bild.org.uk.

Sexuality

If your young person is confused about their sexuality, you can get advice and support from the Switchboard Helpline on: 0300 330 0630 or go to: www.switchboard.lgbt. You can also contact Young Stonewall at: www.youngstonewall.org.uk and Regard, an organisation for LGBTQ people with disabilities:  http://regard.org.uk. Locally, your young person can also access support from Allsorts, see Local Directory for details.

Gender identity and gender dysphoria

It is quite common for children and young people to question their gender identity, especially if they feel that they don’t fit into society’s traditional masculine and feminine stereotypes. Some young people may feel they are transgender, non-binary or gender-queer, for example, while others reject gender altogether and describe themselves as agender, while some may feel their gender changes, which is known as being gender-fluid.

Locally, Allsorts offers support and clubs for LGBT children and young people. Nationally, Switchboard, see above, The Mix: www.themix.org.uk and Regard (see above) can also offer advice and support. Further resources can be found at: https://gic.nhs.uk/info-support/support-groups-and-resources.

Online safety

Computers, tablets and smart phones are such a central part of every day life, that it is inevitable that our children will want to go online. It’s a constant source of worry to all parents – how do we balance freedom to use the internet while still keeping our children safe from its darker side?

Fortunately, there are plenty of resources to guide us through the online maze to ensure that our children and young people can explore safely. For general advice about online safety, the following sites are useful:

Cerebra has a guide on internet safety for parents of children with learning disabilities and autism: https://cerebra.org.uk/download/learning-disabilities-autism-and-internet-safety.

Childnet has resources for parents, including guidance for keeping children with SEND safe online: www.childnet.com/parents-and-carers.

Family Lives has advice on keeping teens safe online on their website: www.familylives.org.uk/advice/teenagers/online/online-safety, including resources on chat rooms, gaming and sexting.

The Foundation for People with Learning Disabilities has resources that are specifically tailored to young people with learning disabilities. Go to:  www.learningdisabilities.org.uk/publications.

Get Safe Online is a website with tips and explanations about everything from social media to banking: www.getsafeonline.org.

Mencap has created internet safety training for people with learning disabilities. To find out more about SafeSurfing, go to: www.mencap.org.uk/about-us/our-projects/safesurfing.

The NSPCC also has advice about keeping children safe online, with guides to setting up parental controls. Go to: www.nspcc.org.uk/preventing-abuse/keeping-children-safe/online-safety.

Thinkuknow has information about how to keep your child/young person safe online. Go to: www.thinkuknow.co.uk/parents. You can also search the resource library, which has topics divided by age range with tailored content for children and young people with SEND

Young Stonewall has produced a guide to staying safe online for LGBT young people, go to: www.stonewall.org.uk/resources/staying-safe-online.

Section three: Teens and adulthood

A place to live

‘He’s always done lots of things out of home and at college and he’s watched all his brothers and sisters leave and he wanted to leave home. I suppose it’s a natural thing…’

Sometimes, it is difficult to imagine your child not living with you when they are older. You may be worried that no one else will be able to care for them and love them in the way that you do. Or, they may want to leave home and you may feel you’re ready for them to leave, but worry that there is no suitable support and provision for them.

This chapter covers what housing options are available for young disabled people in West Sussex. The experiences of parents and young people who have already made the move show that it’s important to think and start planning early for this major move. After all, having the right living space in the right location with the right people is extremely important to a person’s happiness and well-being.

You can start discussing housing options when your child is still at school as part of their transition planning annual review meetings.

‘Letting go, that isn’t easy. I suppose that’s because I have massive love for Tommy. I just wanted the right thing for him. I did ask what would happen about him coming back home again and they said maybe he needed a bedding-in process for a few weeks and so on. I said I didn’t know if I could do this, so I arranged it so that Tommy comes home every Sunday night.’

Where do people live?

Housing arrangements for disabled people have come a long way since the 1960s, when people lived in institutions that kept them apart from the rest of society. Disabled people spent many years lobbying to have the right to live in the community like everyone else. This, plus changes in attitudes and government policy have enabled thousands of people to move out of long stay hospitals, campuses and residential care. But according to a Mencap report, Housing for people with a learning disability, there’s still some way to go to ensure everyone has free choice in their living arrangements and access to support that entirely meets their needs.

Learning Disability England was previously known as the Housing and Support Alliance. Their website, www.learningdisabilityengland.org.uk, provides access to their vast archive of useful articles and information. Go to the drop down menu and click on ‘archive’, which takes you to a new page with detailed information and resources around housing options, rights and the law, good practice and policy.

‘I don’t think there was a terrific amount of choice. It was where he had friends and it wasn’t too far away and he could go to college and back.’

Housing in West Sussex

In West Sussex, only 13 per cent of households live in council housing or housing association properties. Average house prices are high, which means affordable housing is hard to come by. There are several different types of accommodation options for people with a disability. They might choose to live with their family; in private or social rented housing; in owned accommodation; in residential care or specialist placements; or in adult placement schemes called ‘Shared Lives’.

The growing number of disabled people means that more people will need the Local Authority to make housing arrangements for them so they can live as independently as possible.

Planning for the future

‘There was a fair bit of paperwork and people you had to see from that organisation. They had to know every detail, obviously, about your young person.’

Because disabled young people are likely to depend on formal and informal support, planning for the future is crucial. Generally speaking, disabled young people, their families and local authorities should take part in detailed planning and assessments before any change is made to living arrangements. This is to ensure the new accommodation meets the needs of the young person. Planning is also a way of involving your young person in decisions about where they want to live and who they want to live with.

When looking for housing for your young person, it’s really important that the arrangement meets their physical and support needs as well as their social needs. Every person has individual needs, which may range from step-free access or an extra room for a carer, to being near informal support networks, such as their family and friends.

Eligibility criteria for support from adult social care and funding

Once your child is 18 years old, the social care support they need is provided through adult social care. Adult social care workers carry out needs assessments to decide what the young person’s support needs are, whether the young person is eligible for support and if they are, what support social care can offer you and your young person. In West Sussex enquiries are initially directed through the Adults’ CarePoint, see Essential Contacts.

Each of the district/borough councils in West Sussex have their own Housing Options Officers with whom you can discuss your young person’s situation. You will be offered advice on what you could do yourselves or assistance to move into suitable housing. This service is only available to people over 16.

How the council commissions (buys) services

West Sussex’s housing and social care providers have been ‘approved’ through an accreditation process. They are also monitored by the council’s contracts team. Commissioners (people whose job it is to buy these services) work with providers to ensure the services are suitable and value for money.

Types of housing for young people

Continuing to live at home with their family

The typical experience for young people is to live with their families until some time in their late teens or early twenties, when they begin the journey to independent living. They may move into shared flats or student accommodation before moving on to living alone, with friends or partners. However, the same is not always true for young people with disabilities and other support needs.

Official statistics show that the majority of adults with learning disabilities live with their families or in residential care. Councils are keen to support the young person to stay living in their family home, for as long as the family are able to sustain this and meet the young person’s needs. They can offer help to make this work. Some support can be provided through outreach support, day activities, short breaks, respite or access to social clubs. This includes services specialising in working with young people, autism, complex health needs and other needs.

WSCC Adult and Children’s services can organise short breaks for adults with more complex needs. But be warned that this provision is for all ages so your young person may not always be with people their own age.

If your young person has a Personal Budget, it can be used to employ Personal Assistants (PAs) or to meet their needs in other ways. We’d suggest that it’s really important to think about what’s best for your son or daughter in the long-term – don’t wait until there is a crisis when they may have to move out of the family home.

Support at home costs vary, depending on the provider. The money to pay for this can come from the package of support agreed by adult social care and can be arranged by the council or managed by the young person or their family as a Direct Payment.

Supported Living or Housing

‘The best thing is that they get to do what they want to do with their friends. Getting to do things that old people like me don’t want to do!’

Supported living or supported housing, as it’s sometimes called, generally means living in accommodation where there are staff on site. There are two main forms of supported living: a ‘group’ home, where people have their own room but share other facilities; or a self-contained flat or studio. For both forms, support may vary from 24-hour staffing to just a few hours a day.

‘They have a whole package of lovely staff, all very young and motivated. Three guys and four girls on a rota system. One stays overnight, possibly sometimes two. There is always one overnight and three in the house at all times for the four of them.’

In supported living or housing the young person can have a tenancy agreement, which gives them more housing rights. They can claim housing benefit and keep most of their benefits such as Personal Independence Payment (PIP).

Supported housing focuses on helping the young person to develop their life skills and independence, as well as learning to share the responsibility for cooking, cleaning and shopping. The positive side of this form of accommodation is that the young person will have company as well as the security of a service and staff team. However, like all young people, it’s important to remember they can be friends one moment and fall out the next and staff may leave, which can be disruptive.

‘Now there is someone staying overnight who knows them. That’s the most important part. If someone doesn’t know them they don’t know how to deal with them in an emergency.’

Who can use supported living schemes?

To access supported living/housing schemes, a young person will have to be assessed by Adult social care to see if they are eligible for the service.

Choosing the right supported living scheme

‘They are trying to expand on their independence skills. They all have a lovely bedroom with double beds, they are very lucky, they have a lovely home to live in and Clare [the Transition Worker] did a very good job at finding that particular property.’

Supported living is provided by a range of providers in West Sussex. Early planning is the key to identifying the right service for your child as finding the right place can be tricky. Details of supported living accommodation in West Sussex and further afield can be found on the Care Choices website at www.carechoices.co.uk. You just put in your postcode and the type of care you are looking for, then browse the results.

Supported living is registered as ‘Services in your home’ with the Care Quality Commission and so is subject to a different inspection regime to residential care. You can look up their latest checks on local supported living services on the Care Quality Commission website at www.cqc.org.uk.

‘You can pop in at any time, it’s not like school, and it’s like an extension of your home. That’s where they live.’

Where can I find out more?

The following list is a selection of organisations that have further information about supported living schemes, or run their own schemes.

- Aldingbourne Trust offers supported living, living in the community and transitional support to help people develop the skills they need to live on their own. For more, go to www.aldingbournetrust.org/housing.html.

- Chailey Heritage Foundation’s Futures Accommodation is for young adults aged up to 25 with complex needs and offers a stepping stone to young people moving into adult life: www.chf.org.uk/futures.html.

- Grace Eyre supports people with learning disabilities or autism to find a suitable home and also offers a supported living scheme: www.grace-eyre.org/what-we-do/independent-living.

- Impact Initiatives has an advocacy service for people with learning disabilities, autism, acquired brain injuries and physical or sensory impairments to help them to access benefits, find a place to live and to access their community. Go to: https://impact-initiatives.org.uk.

- Mencap has information and advice on supported living, including easy-read guides: www.mencap.org.uk/advice-and-support/housing.

- Outreach 3 Way offers people with learning disabilities or autism supported living services. For more, go to: www.dimensions-uk.org/about/outreach-3-way and www.westsussex.gov.uk and search for ‘care guide.’

- Scope has information on types of accommodation, including care homes, supported living and the shared lives scheme. Go to: www.scope.org.uk and search for ‘supported living.’ You can seek support from other people via their online community.

- South Down provides supported living for disabled people across West Sussex: www.southdown.org/learning-disability-support.

- West Sussex Connect to Support has advice on independent living and care options, with links to other organisations who can offer support. Go to: www.westsussexconnecttosupport.org.

The Shared Lives scheme

‘The social worker suggested that Becky go and live with the Shared Lives carer full-time, but not permanently, while she investigated possibilities for longer term supported living. So the whole idea has been that Becky just lives there short term.’

Shared Lives is when the person lives with another family in their home with the support of that family. Shared Lives is like an adult version of having a foster family. The schemes recruit, assess and support carers who offer accommodation or care and support in their family home.

The Shared Lives scheme can be a good stepping stone for a person with a learning disability or autism moving towards living more independently. Some young people who still live at home with their parents might live with a Shared Lives carer part-time, for example a few days a week.

‘I decided to move home because I was getting to the age where I wanted to move out and my social worker looked at loads of places, then she found this person from Shared Lives. I was OK when I moved in because I’d stayed there three nights a week anyway, so it was sort of like I was there already.’ (Becky, 18)

Who can use Shared Lives services?

To access Shared Lives, a young person needs to be assessed by Adult social care to see whether they are eligible for this scheme, so if your child has a social worker, talk to them about this option.

‘I have a lot less responsibility, which is actually one of the best things… so the involvement that I do have with Becky is on a more personal level, just me and Becky, rather than dealing with all the bureaucracy and the form-filling and phone calls and meetings and all of that. I don’t miss that.’

A financial assessment will be carried out by the Local Authority in order to see if the person needs to make a financial contribution. To find out more, go to: www.westsussex.gov.uk/sharedlives.

‘The best thing for me is that Becky is happy where she is. If Becky was living independently, but she was unhappy, I would find that very difficult. But because it’s what she wants, it’s what she decided and it’s going well, that’s the best thing.’

Residential care

Residential care offers specialist services with high levels of staffing 24 hours a day. It’s for people who need high levels of direct support with personal care and daily living. If a young person is quite independent in these areas then residential care is probably not the right option for them.

Residential care almost always involves living with other disabled people who have been placed there, so there is less choice around who the young person will live with or the people who will support them. Many of these homes tend to cater for older people rather than young people. The exceptions to this are some residential care homes for younger people with complex physical or health needs or those with complex or challenging behaviours.

Residential care homes vary in size from three or four to ten or 12 rooms in a house. Most are ordinary homes on ordinary streets. You have to find the right vacancy, and compatibility with other residents can be an issue.

In a residential home the young person will not have a tenancy, they will have a licence, which means they have fewer rights. It also means that the landlord has access to their room and can change their room.

Who can get residential care?

To access residential services, young people will need to be assessed. If the young person meets the eligibility criteria and moves into residential care they get a full package of support and care – which means all of their accommodation, support and care costs are met by the council. This also means, however, that the person has a very low personal income as nearly all their money goes towards their support and care costs.

Choosing residential care

You can find details of local care homes in West Sussex and further afield on the Care Choices website at www.carechoices.co.uk.

Care homes have to be registered, so are subject to inspection by the Care Quality Commission (CQC). You can see details and recent inspection reports of care homes on the above website or on the Care Quality Commission’s website: www.cqc.org.uk.

Social housing

Social housing is property that you rent from the council or a housing association. People living in social housing have a secure or assured tenancy which means they can only be evicted for breaking certain rules and only if a judge agrees. So if a young person sticks to the rules of the tenancy, this could be a home for life.

Social housing has cheaper rents, which can usually be paid in full by housing benefit, depending on the young person’s income. The landlord – the council or the housing association – is responsible for most repairs and maintenance.

Unfortunately, there is high demand for social housing in West Sussex and it can sometimes take a long time bidding before there is an offer of a property. Also remember that all of the young person’s support needs will need to be arranged before they move in.

In some areas of West Sussex, to register for social housing you will need to speak to your district council, most of whom have application forms online. Eligibility rules for each housing register vary. You can find contact details for your district or borough council in the directories. Alternatively, go to www.westsussex.gov.uk and search for ‘affordable rented housing’.

If you are located in Adur and Worthing, Chichester, or Mid Sussex, to apply for social housing locally you need to register with the choice-based letting scheme Sussex Homemove. You can download an application form from the council’s website. Go to www.westsussex.gov.uk and look under Housing, or go to www.homemove.org.uk.

You can also visit any of the local housing offices where staff can help you with form-filling or any queries you may have. You may need to complete a medical self-assessment form for your young person with information about any disabilities, impairments, medical conditions or mental health needs they may have.

For young people with mobility needs, there is a separate mobility self-assessment form. Ask the young person’s GP or any other medical workers for supporting information. If the young person has a social worker, you could ask them for a supporting letter.

A word about accessible housing

West Sussex County Council has a register of all their adapted and wheelchair accessible homes. All those applying for the accessible housing register are assessed for mobility needs and coded 1, 2, 3 depending on the severity of the need. All properties available to let are then advertised as being suitable for particular codes with the priority going to that group. You can also look for accessible housing on the Accessible Property Register: www.accessible-property.org.uk.

Home ownership schemes

HOLD – Home Ownership for People with Long-term Disabilities is a Government-backed scheme that helps disabled people to buy a shared ownership home and live independently by buying an initial share in the house that they can afford. If none of the shared ownership homes available can meet the person’s needs, the disabled person may qualify to buy a home on the open market. More information is available at: www.ownyourhome.gov.uk/scheme/hold.

The private rental sector

This means renting a property owned by a private landlord. For some people, it can be a good option for finding somewhere to live as it can be difficult to get social housing owned by the council or housing associations in West Sussex.

There are lots of different types of properties available to rent privately. This is one of the fastest ways to find somewhere to live and there is lots of choice about where you live. You can look for properties in local letting agents, as well as for ads in shops, local papers, the Friday Ad or on the internet.

Tenancies

Private sector landlords normally give their tenants a six or twelve month fixed term Assured Shorthold Tenancy to begin with. After the fixed term is up, the landlord may decide to give another fixed term tenancy, or decide not to but allow the tenancy to continue on what is called a statutory periodic tenancy or may decide to end the tenancy. If the landlord doesn’t want to extend the tenancy they must usually give two months’ notice and may have to seek possession through the courts. The landlord is responsible for most repairs and maintenance.

Housing benefit in private accommodation

Rents are higher in the private sector than in social housing. Some rents may be higher than the amount that housing benefit will cover and some private landlords will not take tenants who are on housing benefit. Contact the housing benefit department to work out how much housing benefit the young person may be able to get.

Moving in costs

You usually need one month’s deposit and one month’s rent in advance before you can move in and if you go through an agency you may also have to pay agency fees. Remember, if your young person needs support to live independently you will need to arrange this before they move in.

At the start of the tenancy, when your young person has paid any fees and the initial deposit, the landlord must protect the tenancy deposit in a government approved scheme. The deposit should be returned at the end of the tenancy, although the landlord can make reasonable deductions from the tenancy deposit if the tenant has caused damage or hasn’t paid the rent. You can find out more about tenancies and your young person’s rights as a private tenant at https://england.shelter.org.uk.

Getting adaptations to housing

The council can help adapt a property whether you own it, rent privately, or are a council or housing association tenant. This can include providing equipment to make daily tasks easier, adapting your home to improve access or help with bathing. See more on adaptations here.

Tips on choosing somewhere appropriate

‘If everyone is quietly in their rooms I would be uncomfortable. I would look for staff that are really understanding and who join in with them.’

- Listen to what your young person wants.

- Be assertive with social services – if you’re not happy with what’s been offered, push for alternatives.

- When you visit a possible placement, do the people living there look relaxed and happy with the staff?

- Try and find a short break placement that you feel happy with first, for one or two nights a week so your child can get used to it. If a placement is available you may be able to build up the amount of time your young person spends there.

- It’s important to have good communication with all the people who are looking after your young person.

- Give the carers as much information as you can, including your routines.

- Build a relationship with the carer and be accepting of the fact that they may do things differently.

- Accept that having less responsibility also means that you have less influence.

‘They are all learning because they don’t know that person at all. So what I did was I got myself some cards and I put: these are the foods he likes; these are the activities that he likes. I put different things on different cards and gave them to the carers to give them some guidelines. And also what might upset him, anything to do with that.’

‘Support [your young person] by helping them do washing up and washing their clothes and putting clothes in the washing machine and helping them put the machine on … Teach them to do it and then they can do it the next time.’ (Becky, 18)

Section three: Teens and adulthood

Employment and life skills

I just want my son to be included in the workplace as a member of the community.’

Many of us hope that one day our young person will be able to get a job. Now young people are expected to stay in education or training until they’re 18, they can’t leave school at 16 and get a full-time job as they might have done in the past (see Raising the Participation Age), but you will still want to help them take the right steps towards employment. Some of us may not see a paid job as a realistic goal for our child but could imagine them volunteering.

This chapter provides an overview of the options available to young people, including volunteering and employment. Further information regarding employment and benefits can be obtained from www.gov.uk.

Where to look for work

If your child is ready to look for a job, a Saturday job or summer job might suit them before they leave school or college. There are many websites that list job vacancies including:

- The Department of Work and Pensions (DWP): https://findajob.dwp.gov.uk

- The Argus: www.theargus.co.uk/jobs

- Gumtree at: www.gumtree.com/jobs

- Jobs at West Sussex County Council: www.westsussex.gov.uk/jobs

- West Sussex County Times: www.wscountytimes.co.uk/jobs.

Alternatively, your young person could visit their local Jobcentre Plus. In West Sussex, Jobcentre Plus are based in Bognor Regis, Chichester, Crawley, Haywards Heath, Horsham, Littlehampton and Worthing – see the local directory at the back for more information. Jobcentre Plus helps employers fill vacancies; and provides help and benefits for people who can’t work. They also have specialist Disability Employment Advisers – read more about these below.

If your young person is looking for work, it often makes sense to approach your contacts and friends. Some of us have persuaded a local shop or business to give our child a few hours’ work experience and this has led to paid work.

But most of our children will need some extra support to be ready for and to find employment. We’ve found that it’s a good idea to talk to other parent carers and professionals to get some ideas and pick up tips about things. For example, teachers may have good advice on how to find voluntary work, get work experience or may be able to suggest other sources of help.

There is information for young people aged between 13 and 25 on Your Space, which is a dedicated section of West Sussex County Council’s website for young people. It has links for work, volunteering and apprenticeships. Young people can also get face-to-face advice at the local authority’s FindItOut Centres, see Local Directory for details of both services.

West Sussex Library Service offers access to My Work Search, which is an online toolkit to help job seekers, with links to books, magazines and online resources, as well as helping people to train, write CVs and apply for jobs in the area. To access My Work Search, you will need to sign up at a West Sussex library to get an account, then you can log in from anywhere.

Scope’s website has advice on how to find a job, including networking, training and where to look. For more information, go to: www.scope.org.uk/advice-and-support/finding-jobs.

You can also find more careers and jobs advice for people with disabilities at: www.disabilityrightsuk.org/careers-and-work-disabled-people.

Disability Employment Advisers (DEAs)

Disability Employment Advisers (DEAs) work in your local JobCentre Plus. A referral to a DEA is usually made by a Jobcentre Advisers. DEAs can provide details about government initiatives that help disabled people get work and provide referrals to suitable schemes – see the Work and Health Programme. They also provide advice on suitable job vacancies and approach the employer on the young person’s behalf if necessary and conduct an ‘Employment Assessment’ to identify the young person’s abilities and suitability for work or work-related training.

After making initial contact, the DEA will arrange an in-depth interview with the young person to establish their interests, previous work experience and education and any concerns they have about work. It can be useful for parents to attend, although it’s not always necessary.

The Work and Health Programme is a scheme that provides a full range of support to people facing significant barriers to work, including those with health conditions and disabilities. It offers assistance with personal skills, support in the workplace and help in developing a career in the longer term and is delivered by Seetec Pluss: www.seetecpluss.co.uk/programme/work-and-health-programme.

Access to Work is a scheme that can provide practical and financial support to help people with disabilities into work. The programme can help to pay for:

- A communicator to help at interviews if a person is deaf or has a hearing impairment.

- A reader to help people at work who are blind or have a visual impairment.

- Special equipment or alterations to existing equipment.

- Alterations to premises or the working environment to make it accessible.

- A support worker to provide practical help at work or getting to work.

- Help towards the cost of getting to and from work if a person can’t use a car or public transport because of their disability.

For more information on Access to Work, call: 0800 121 7479, textphone: 0800 121 7579 or go to: www.gov.uk/access-to-work.

Tips to help you

- If your young person is going to places such as Jobcentre Plus, it’s a good idea to take along any paperwork that will help explain their special needs – a recent report from a doctor or educational psychologist for example.

- See it as a long-term project to help your young person show what they can do.

- Volunteering in a charity shop can help them get paid shop work and also provide them with a reference for when they leave college.

- If your young person might want to work with children, see if they can help out with an organisation such as Cubs or Brownies.

Supported internships, traineeships and apprenticeships

Supported internships

Supported internships are a government funded initiative that offer specialised employment-focused study programmes for young people aged 16 to 24 with learning difficulties and/or disabilities who have an EHC Plan and are ready to move into employment but need extra help to do so.

Supported internships are run through further education colleges and the idea is that trainees will learn from expert career coaches while doing real jobs for a minimum of six months. Employers will also receive support from the coaches, to give them the skills they will need to work with disabled young people and to help them understand the business case for employing a diverse workforce. BASE – the British Association for Supported Employment has more information about supported internships on their website: www.base-uk.org/policy/supported-internships. Locally, supported internships are offered at Plumpton College: www.plumpton.ac.uk and via Team Domenica: www.teamdomenica.com as well as other colleges in the county, but their courses vary annually, so it is best to contact them directly to find out what they can offer.

Traineeships

The new mainstream traineeships programme aims to give 16 to 24 year olds the workplace experience and job skills that employers require and are open to disabled young people with less complex needs. The aim is to get young people into work or onto an apprenticeship. The programme covers things like work research and preparation training as well as English and Maths training and a work placement.

Apprenticeships

As employees, apprentices earn a wage and work alongside experienced staff to gain job-specific skills. Off the job, usually on a day-release basis, apprentices receive training to work towards nationally recognised qualifications. Young people over 16 and not in full-time education can undertake an apprenticeship. They can take between one and four years to complete depending on the level of the apprenticeship, the apprentice’s ability and the industry sector. The minimum hourly rate in 2021 is £4.30 for the first year, after which apprentices receive the national minimum wage for their age group.

Employers and trainers are offered incentives to offer apprenticeships to young people with special educational needs and/or disabilities. Grants of £1,000 are available to employers and training providers and, if the business employs fewer than 50 people, they may eligible for additional funding and support. To find out more about supported internships, traineeships or apprenticeships go to: www.gov.uk/apply-apprenticeship.

Alternatively, you can also find out about apprenticeships, career tasters and volunteering at: www.westsussex.gov.uk/jobs/apprenticeships, which has an interactive map of current apprenticeship vacancies.

Other initiatives

Network West Sussex is an initiative that is run by The Aldingbourne Trust, the LIMA team, Outreach 3 Way, Signposts and Worthing Mencap. Together these organisations offer preventive services for people in West Sussex who have a lifelong disability or autism via two routes:

My Network consists of drop-in sessions at venues across West Sussex. They offer information, advice and guidance on housing, leisure, learning, money management, health and much more. Activities and workshops have a focus on helping people to live independent lives. People must be aged over 16, but enquiries are also welcomed from family carers and friends.

My Network Plus is a housing support service for adults aged 18+ with a lifelong disability or autism have a tenancy but not a personal budget and people who have care needs. Priority is given to people who are receiving support from adult social care. The service works in partnership with My Network providers to make sure individuals get the support they need to continue to live independently in their own homes.

My Network Plus is a referral only service via West Sussex County Council’s Lifelong Services Teams (adult social care). My Network Plus customers will have their support needs met in a range of ways, with group or one-to-one support available. Typically one-to-one support will be for financial management, paperwork, developing and maintaining life-skills, monitoring health and well-being, emotional support, practical assistance, planning, as well as providing links to other services and support available in the community.

Supported Employment West Sussex is a partnership initiative run by Aldingbourne Trust’s Workaid and Impact Initiative’s Workability. Workaid provides employment support to people in West Sussex with lifelong disabilities and autism while Workability provides employment support to people with physical and sensory issues, acquired brain injury and carers. The scheme helps people to find employment and maintain it as well as supporting employers to ensure that the placement is successful. For more information, go to www.supportedemploymentwestsussex.org.

Aspire Sussex runs adult education courses across the county, including employability skills and qualification courses for those aged 19+. It also offers a programme for adults with learning disabilities, which run within day centres as well as Aspire’s adult education centres. People with additional learning needs can be given extra support on qualification-based courses such as English and Maths. For more information, call 07821 341712, email: enquiries@aspiresussex.org.uk, or go to www.aspiresussex.org.uk.

Auntie Val’s Ability Centre in Storrington is a jam and chutney making community interest company that aims to get people of all ages with disabilities into work either at Auntie Val’s or within the wider business community by offering work experience, training and social integration. For more information go to: www.auntievals.com.

Barnardo’s MAKE TRAX supports young people aged 16 to 29 who are not in education, employment or training (NEET) and live in Crawley, Horsham or Mid Sussex. www.barnardos.org.uk/what-we-do/supporting-young-people/employment-training-skills/make-trax.

Blatchington Court Trust provides a service to young people under 30 who have visual impairments. They can assist with job searches, CV writing and interview practice as well as advising on Access to Work and finding voluntary work to develop people’s skills and experience. For more go to: www.blatchingtoncourt.org.uk/service/employment-support.

The Butterfly Project, Horsham is a social enterprise that supports adults with learning difficulties, autism and other disabilities to engage in work and community activities so that they can develop their skills and build their confidence and self-esteem. For more information go to their Facebook page: www.facebook.com/TheButterflyProjectHorsham or call: 01403 248580.

Esteem runs a Volunteer 2 Work scheme to help young people gain skills and experience, as well as training workshops and a Mentor Me scheme. https://esteem.org.uk/what-we-offer.

Farm Buddies connects small groups and individuals with local farms so that they can visit weekly, usually for a minimum of 12 weeks and do tasks which are tailored to individual needs. Go to: www.farmbuddies.org.uk.

Ferring Country Centre is a local charity that provides training and work experience for young people with learning difficulties to help them go on to do voluntary or paid work. Go to www.ferringcountrycentre.org.

JubyLee Bakes CIO is a charity that was created by a group of young people with special needs producing ‘Special Bakes by Special People’. JubyLee Bakes is run for young people with a variety of learning disabilities, many of whom also have autistic spectrum conditions. The young people’s views and ideas are continually incorporated into every aspect of the business. They hand make a variety of classic bakes and other treats and work to strict food hygiene standards in five-star rated kitchens. They sell their goods at markets and other events in West Sussex, as well as supplying Norwegian Airlines’ Gatwick Office, town centre cafés, Collyer’s Sixth Form College, and a variety of other local functions.

Young people with learning disabilities and other special needs are welcome to join JubyLee Bakes as volunteers. JubyLee Bakes can provide work-based training in baking and food hygiene. There is also the chance to develop other skills including packaging goods, and selling bakes and handling money at events.

Any young person who is interested in joining the team must have a personal assistant (PA) or carer with them who is able to actively support them during baking and sales sessions. For more information, go to: www.jubyleebakes.org.uk, or call the general manager, Ellen, on: 01293 526509 or 07709 275278.

The Prince’s Trust runs accredited courses offering support and guidance for children and young people in life skills and education, employment and training: www.princes-trust.org.uk.

Southdown runs a specialist work and well-being service for people aged 16 years and over with mental health conditions, providing support to secure and retain employment: www.southdown.org/work-and-wellbeing-sussex.

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH) runs a social enterprise called Saspire, which offers training and voluntary work experience to support people with disabilities. For some people this is a direct stepping stone to employment, for those with more substantial disabilities it offers the opportunity for voluntary work, interacting with others in a safe and secure environment. For more information, please contact the SASBAH office on: 01825 873045, or email: office@sasbah.org.uk.

The Well-being service operates in various locations across the county and offers careers and employment support to people aged 18+: Adur and Worthing: www.adur-worthing.gov.uk; Arun: www.arun.gov.uk; Horsham www.horshamdistrictwellbeing.org.uk (also has a 16+ youth hub) Mid-Sussex: www.midsussex.gov.uk (also has a 16+ has a youth hub).

West Sussex County Council also runs career taster schemes, with a focus on helping people who may face barriers to employment due to their age or health conditions and those who are long-term unemployed. Go to: www.westsusex.gov.ukand search for ‘career tasters.’

West Sussex County Council has a careers team offering support to young people who are NEET (Not in Employment, Education or Training) aged 16 t0 18 or 16 to 25 with an EHC Plan: www.westsussex.gov.uk/education-children-and-families/your-space/work/careers-guidance.

Youth Hubs offering careers and employment support. Chichester District Council: www.chichester.gov.uk. Crawley: https://crawley.gov.uk.

Voluntary work

‘By doing voluntary work it gets me out of the house and gives me more confidence at being independent and doing stuff on my own.’ (Simon, 23)

Unpaid voluntary work can be a stepping stone into work. Young people can work voluntarily without it affecting their benefits and, even if it doesn’t lead to a job, it’s a way of meeting new people, gaining new skills and getting experience of the working world.

Some parents find volunteering opportunities for their young people through their own network of friends and family. Think creatively about where their strengths and interests lie – it’s always worth asking around in your social circle as you never know what might work out.

‘Joe loves trains and transport. We found he could volunteer to look after the flower planters on some station platforms in the area and this means he gets to travel between them by train with his support worker.’

Young people can gain volunteering experience through the Duke of Edinburgh Award. It offers all young people aged between 14 and 25 the opportunity to help others, acquire new skills, experience adventure and make new friends, while at the same time working towards a nationally recognised award. Young people with SEND are welcome but some centres have specialist knowledge and experience in delivering DofE for young people with additional needs, so if you have questions about accessibility or meeting your young person’s needs email: dofe@westsussex.gov.uk (local) or find out more at: www.dofe.org (national).

There are also volunteering opportunities available with West Sussex County Council. To find out more, go to: www.westsussex.gov.uk/volunteering.

Concordia Youth Action (CYA) (14 to 24)is open to all young people who would like to develop their skills and meet like-minded people through volunteering and social action. Holds weekly on-line meetings. Go to: www.concordiavolunteers.org.uk/Pages/Category/cya.

The National Citizenship Service is a Government funded scheme for young people aged 15 to 17 ( or with SEND up to 25) to help them build their skills for work and life, take on new challenges and meet new friends. It includes a short time away from home as well as a team project to help the local community. To register ring 0800 197 8010 or register on their website: https://wearencs.com.

Self-advocacy

Attending a self-advocacy group can be a way for young people with SEND to make their voices heard and to develop their confidence. Both are key life skills and will help your child to maximise their independence. There are a number of self-advocacy groups running in West Sussex, including:

As perger’s Voice Self-Advocacy Group is a community group run by and for adults with Asperger’s. Call: 07471 353062, email: aspergersvoice@gmail.com or go to their Facebook page: www.facebook.com/AspergersVoice.

Asperger’s Syndrome Self-Advocacy (ASSA) is an independent self-advocacy group in Littlehampton for people aged 18+ with Asperger’s. The group is currently meeting online due to Covid-19. Email: assagroupws@gmail.com or go to www.facebook.com/ASSAWestSussex.

Impact Intitives runs self-advocacy groups for adults with learning disabilities, including: People Come First (Horsham, call: 07920 234 605), SpeakAbout (Worthing, call: 07741 241209, email: worthingspeakabout@gmail.com) Speak Up (Burgess Hill call: 07776 072603 or email: midsussexspeakup@gmail.com), and Voice (Chichester, call: 07748 088427).

Section three: Teens and adulthood

Travel for young people

Travelling independently is an important part of growing up, but for some young people this will always be difficult without support. This chapter looks at ways of making travel easier and includes information about special allowances and concessions available to disabled young people. Don’t forget to have a look at our Social life and travel chapter, too, for general information about accessibility, planning days out and trips away, as well as holidays and Changing Places fully accessible toilets.

Travelling to college

Help for all young people

16 to 17 Saver is a card that allows young people aged 16 to 17 years to get fifty per cent off Standard Anytime, Standard Off-Peak, Standard Advance and Season tickets for travel at any time of day. The card costs £30 per year and can be used on your phone via the Railcard app, or it can be posted to you. For more information go to: www.16-17saver.co.uk or call 0345 301 1656.

16 to 25 Railcard - National Rail also provides this card, which entitles the card holder to a third off rail fares. It costs £30 per year or £70 for three years. Mature students can also apply for an annual railcard, as long as they can provide evidence that they are in full-time education. For more information visit www.16-25railcard.co.uk or call 0345 3000 250

Compass Travel Sussex Student Fare Card - this offers 25 per cent off adult bus fares in West and East Sussex to students aged 16 to 19 who are in full-time education. It costs £25.00 and is valid for a year. For more go to: www.compass-travel.co.uk/sussex-student-fare-card.

Metrobus - offers 25 per cent off adult fares for students over 16 in full-time education and young people on apprenticeship programmes on Metrovoyager, Crawley Metrorider and Horsham Metrorider tickets. To get the discount, students must register for a free Student key card, which can then be topped up online or at the Metrobus travel shop in Crawley. See: www.metrobus.co.uk/student-eligibility-and-id.

Plusbus is a scheme where travellers can add unlimited bus or tram travel around the town or city served by rail, so you can use the bus to get to or from the station, for example. To find out more go to: www.plusbus.info.

Stagecoach offers discounted tickets for school, college and uni students. Go to www.stagecoachbus.com and click on ‘buy tickets’ then select ‘student tickets’ from the drop-down menu to find out what’s available in your area.

Unizone is a ticket scheme giving weekly, monthly or quarterly unlimited travel at a discount for college and university students within specific Unizone areas who have a 16-17 Saver or a 16-25 Railcard. It is open to students studying at any of the universities in Sussex, as well as Plumpton College, and young people at college who have a valid NUS or TOTUM card. Go to www.southernrailway.com, click on ‘Tickets’, then choose ‘Discounts and railcards and select ‘Unizone’ from the drop-down menu.

Young Person’s Coach Card is run by National Express and offers a third off fares to young people aged 16 to 26 years and full-time students. See: www.nationalexpress.com/en/offers/coachcards/young-person. They also offer separate discounts for people with disabilities.

Help related to disability or SEN

If you think your child will need support getting to and from college, flag it up with the Senior Planning Coordinator during their year 11 annual review.

West Sussex County Council has a transport policy statement for students in further education on their website. Transport may be available if your young person meets their eligibility criteria. Parents will be asked to make a contribution towards transport costs unless the family is on a low income. For more information visit www.westsussex.gov.uk/schooltransport and click on ‘Post-16 and college transport for students with SEND’.

Schools and colleges also have a 16-19 Bursary Fund for students from low income families who may not meet the eligibility criteria for help with transport.

Independent travel training

‘She looks like any other teenager... but she’s leaving school with a reading age of less than nine years. She still can’t do independent travel on the bus, we have to practise journeys.’

Some schools and colleges offer independent travel training to help young people to get about on their own. Parents may worry about a child’s vulnerability, but there are many advantages in the long run if your child can learn to travel independently – including opportunities to participate in social and leisure activities, training, further education and employment. It may also free up your time if you don’t have to be your child’s chaperone or taxi service. Ask your child’s school or college about travel training, what it will involve and how you can support your child to learn these life skills. Giving this a try should not mean your child’s existing transport arrangements will be cancelled.

‘My son’s self-confidence and self-esteem have blossomed. In his eyes, the world has become accessible and he feels that he fits in with his peers, which is so important to a teenager.’

Some short breaks or 1:1 buddying schemes offer trips out in the community for young people. As part of this, there may be the opportunity for young people to travel on public transport, which can be a good time to practice journey planning and build independence.

Using technology to help

If your young person has a mobile phone, these can be used to encourage independence and also to provide parent carers with reassurance. The easiest way to do this is for your young person to check in with a text every now and then – to let you know when they leave and arrive somewhere.

However, if you feel you want more reassurance, a number of location apps are available – these offer the option for tracking in real time and may be of particular benefit during the first few journeys your young person makes independently. For example:

bSafe is an app available on Android and iOS that can be operated by touch or voice command. It offers the option for your child or young person’s location to be shared with contacts so you can track their journey via GPS. There’s an SOS button, which records sound and video when pressed as well as calling for help.

Find My Friends is a similar app, which allows you to broadcast your location to friends. There’s a version for Android and iOS.

Life360 Family is a free app available for iPhone and Android that allows you to choose two locations, such as ‘home’ and ‘school’. When your child sets off for school, the app checks them in and sends you a text to let you know they’ve arrived safely. There is also a ‘panic’ option, which sends texts and emails to carers showing your child’s precise location. The paid option allows you to choose additional locations.

What3Words is an app recommended by the emergency services, which has assigned every square metre of the world with a unique combination of three words. With the app you can share a precise location with others, which is useful for meeting people, but it can save lives when people need help but aren’t sure of their exact location.

Some tracking apps including Find my Friends and Life360 also allow you to set up geofences, boundaries in which your child can move freely, but if they cross the geofence, a notification will go to your phone to let you know. This could be useful to allow parent carers to gradually expand the area for independent travel and for teens who have just started to drive, for example.

There is also an array of wearable tech to suit all ages and abilities including smart watches with in-built GPS trackers, some of which can also receive calls from and make calls to pre-programmed numbers.

There are pocket trackers, which can be slipped in a bag or jacket. Some have in-built panic buttons which can be programmed to call your mobile phone. There are also GPS trackers that can be clipped to clothing or slipped in shoes.

Journey planning

Teaching young people to plan their journeys is an important part of travel training, and there are lots of local and national resources that you can use to help your young person work out their route, timings and more.

West Sussex County Council has a dedicated cycle route planner, which is available as a free app for most smart phones. You can visit their website and search for ‘cycle journey planner’ for further information.

For travel information on local journeys by bus go to their website and search for ‘bus routes and timetables.’ You can also go to www.traveline.info to plan journeys and compare travel options.

If you’re planning to travel in and around London, Transport for London (TfL) has a journey planner on its website at www.tfl.gov.uk as well as information on assisted travel. It also offers a travel mentoring service to support people to plan journeys and, if needed, a person to accompany you on the first few journeys. For more go to: https://tfl.gov.uk/transport-accessibility.

For local and national rail travel, contact National Rail Enquiries or visit their website at www.nationalrail.co.uk. For more on accessibility at national rail stations go to: www.nationalrail.co.uk/stations_destinations/default.aspx and search by station name.

Online resources like Google maps or sites like www.streetmap.co.uk allow you to plan journeys from one point to another and provide you with text and map details you can print out. Your young person may also benefit from downloading one of the many travel apps that are available for smart phones. Many provide live travel information, which can be really helpful when services are cancelled or delayed.

Locally, the Aldingbourne Trust can help disabled people to plan travel, apply for discount schemes and book tickets. Go to their website: www.aldingbournetrust.co.uk/care-and-support/advice-guidance and scroll down to ‘independent travel’ for more information.

Other support with public transport

Helping Hand Scheme

This is a card scheme, which is being supported by several bus companies in West Sussex including: Big Lemon; Compass Travel; Metro bus; Southdown PSV; Stagecoach; as well as Brighton and Hove Buses in East Sussex. It is a simple card that the holder can hand to the driver to give them extra information such as ‘Can you call out the correct stop’ or ‘Needs priority seating’. It does not have to disclose the person’s condition to the driver, but this can be added to a bespoke card, if preferred. To find out more go to: www.metrobus.co.uk/helping-hand, or call 01273 886200.

Community Transport

There are various Community Transport Service providers operating across West Sussex that can help people who find it difficult to use public transport. They run regular services for people to go shopping. Some buses have a passenger lift or a low-level floor, so they’re ideal for people who can’t manage steps or who use a wheelchair. Drivers are trained to help passengers on or off the bus and to make sure the journey is smooth and comfortable. You can find out more about the services on offer in your area by going to www.westsussex.gov.uk/communitytransport.

National coach travel

Disabled adults can also apply for a National Express Disabled Coachcard, which offers a third off travel throughout the UK. For more information go to: www.nationalexpress.com/en/offers/coachcards or call their contact centre on 0871 781 8181. There is a charge for the card and it is valid for a year. National Express also offers an Assisted Travel service, which you can find out about at: www.nationalexpress.com/en/help/accessibility. If your young person is a wheelchair user, they recommend that you book assistance at least 36 hours before you travel by calling 0371 781 8181.

National train travel

Your young person may qualify for the Disabled Person’s Railcard if they have a disability that makes travelling by train difficult. The card offers the young person and an adult companion a third off most fares across the UK. For more information, go to www.disabledpersons-railcard.co.uk.

The Disabled Person’s Railcard can be registered to an Oyster card, which gives people a third off fares on the London Underground. Holders can also get a third off an Off-Peak Travelcard for one adult travelling with them. There is usually a charge of £20 for a Disabled Person’s Railcard. If your young person does not want apply for the Disabled Person’s Bus Pass, West Sussex County Council may offer a free one year railcard instead.

Southern Rail also offers a free Travel Support Card, designed to help anyone who finds it tricky to ask for help when travelling. The card can include details about your journey, what you might need help with and who to contact in an emergency. To find out more, go to: www.southernrailway.com/travel-information/travel-help/assisted-travel/support-whilst-travelling.

Access and assistance with rail travel

When travelling by train you can book special assistance so rail staff will help you during your journey, which could include someone to:

- meet you at the entrance/meeting point and accompany you to your train

- provide a ramp on and off your train if you need one

- meet you from your train and take you to your next train or the exit

- carry your bag

You can book help at short notice – although some companies ask for up to 24 hours’ notice – by calling: 0800 022 3720, or by filling in the online form at: www.disabledpersons-railcard.co.uk/using-your-railcard/passenger-assist. You can also book in person at any staffed train station.

Taxi travel

Taxi companies provide wheelchair-accessible cabs, but there are a limited number of cabs available, so you may have to wait longer. It’s best to book them in advance.

In Mid Sussex, if a young person is over 18 and qualifies for a Disabled Person’s Bus Pass but cannot use buses because of their needs, they may be eligible for taxi vouchers instead of the pass. To find out more, go to www.midsussex.gov.uk/travel and click on ‘Taxi Vouchers’, call 01444 477212 or email taxivouchers@midsussex.gov.uk.

Travelling by car

Vehicle Tax Exemption

Young people are exempt from paying vehicle tax if they:

- Receive the higher rate mobility component of DLA or the enhanced rate mobility component of Personal Independence Payment (PIP).

- Have a car that is only used by them or for them. The car could be owned either by the young person, or by their parent or carer. The vehicle must be registered in the disabled person’s name, or their nominated driver’s name (this may be you as their parent carer). The vehicle must only be used for the disabled young person’s needs. It cannot be used by the nominated driver for their own personal use.

To apply, you must get a Certificate of Entitlement to show that your young person gets PIP or DLA. Call: 0800 121 4433 (PIP) or 0800 121 4600 (DLA). Then take the certificate to your local Post Office, along with the vehicle’s V5 and a valid MOT certificate. For more information go to: www.gov.uk/government/publications/ins216-how-to-apply-for-free-disabled-tax.

Blue Badge scheme

If your young person gets the higher rate mobility component of DLA, or eight points or more under the ‘moving around’ section of the mobility component of PIP, they will be entitled to a ‘Blue Badge’. A person who is severely sight-impaired will also meet the required criteria. It is possible to get a Blue Badge if you don’t claim DLA/PIP but ‘have a permanent and substantial disability which means you are unable to walk; or you have very considerable difficulty in walking.’ In this case a young person may need to attend a mobility assessment clinic. There is a fee for issuing the badge. A booklet is issued with every Blue Badge to explain how to use it properly.

Motability

Motability is a scheme which means some of the money from the mobility component of Disability Living Allowance (DLA) or Personal Independence Payment (PIP) can be used to lease a car. If your child receives the higher rate mobility component of DLA or the enhanced rate of mobility for Personal Independence Payment (PIP) and it has at least a year to run, you or the young person (if they are 16 and over) can use the mobility part of the allowance to lease a car, scooter or powered wheelchair.

Some disabled people have found that, under PIP’s tougher rules for assessing problems with walking, although they were eligible for Motability under DLA they are not when they are reassessed for PIP. If this happens, the person’s Motability vehicle has to be returned. You can find further information on this by going to their site www.motability.co.uk and searching for ‘unsuccessful PIP reassessment’ or you can call 0300 456 4566.

Learning to drive

Young people can begin to learn to drive at 17, unless they receive the higher mobility component of DLA or the standard or enhanced mobility component of PIP, in which case they can start learning when they are 16.

Learning to drive is expensive. The Family Fund offers a grant to help eligible young people aged 16 and 17 take the first steps in learning how to drive. Their Driving Ambitions grant supports the young person to get started by funding a combination of: a provisional licence; theory test; learning materials, such as books or DVDs; and a first taster lesson. This is only available for an eligible young person who has not yet had any driving lessons. For more information go to: https://www.familyfund.org.uk/driving-ambitions. Please note the Family Fund cannot provide support for ongoing driving lessons.

If your young person is a Motability customer already, Motability may be able to help with the cost of driving lessons. Contact their Grants team to discuss this.

There are several Independent Mobility Centres around the country that provide advice about learning to drive. The nearest centres locally are in Worthing, Uckfield, Leatherhead and Carshalton. Staff can give advice and provide assessments to determine the support needed to help a person to drive. The centre also has a list of driving instructors who teach using specially adapted cars, or have experience of teaching disabled people. They can also provide information and advice on getting a car adapted for a young person’s needs. For more, go to: www.drivingmobility.org.uk.

A number of organisations offer driving experiences for under 17s. Admiral’s Young Driver scheme offers half-hour lessons for children aged four to 17, which can be a great introduction to driving in a safe environment. They are fully inclusive and experienced at teaching young people with disabilities and also offer lessons in adapted cars with hand controls for wheelchair users. For more, go to: www.youngdriver.eu.

The Theory Test

The driving test is made up of a theory and a practical section. Theory tests are usually held at test centres, which are generally wheelchair accessible and offer specialist facilities for disabled people. If your local centre isn’t accessible to your child, they can take the test at home or at a different centre. You can discuss access requirements with the DVSA by emailing theorycustomerservices@dvsa.gov.uk or calling 0300 200 1122.

If your young person has reading difficulties, disabilities or health conditions make sure that they say so when they book the test, see: www.gov.uk/theory-test/reading-difficulty-disability-or-health-condition. It usually takes around 40 minutes to complete the written test, but young people may be eligible for extra time, someone to help them or other adjustments.

The Practical Test

No matter how serious a young person’s disability might be, they will take the same driving test as everyone else. When booking the practical test, young people should let the Driving and Vehicle Standards Agency (DVSA) know about their disability, reading difficult or health condition because they may be entitled to adjustments. Call: 0300 200 1122 or go to: www.gov.uk/driving-test/disability-health-condition-or-learning-difficulty.

If your child has an autistic spectrum condition, the National Autistic Society has advice about learning to drive and links to other resources. Go to: www.autism.org.uk/advice-and-guidance/topics/transport/driving/england.

Pass Plus

For drivers who have recently passed their theory and practical test it’s worth considering taking part in Pass Plus. This is a six-hour course, specifically designed to help young drivers to drive more safely. Successfully completing the course in addition to passing the driving test can reduce the insurance excess for young drivers. For more go to: www.gov.uk/pass-plus.

Section four: Directories

Essential contacts

Adults’ CarePoint

Social care support or advice for over 18s (for under 18s, see Integrated Front Door).

Tel: 01243 642121

Email: socialcare@westsussex.gov.uk

www.westsussex.gov.uk/social-care-and-health/social-care-support/adults

Benefits Advice (Reaching Families)

At the time of writing Reaching Families is working on a new benefits advice service for parents, carers and families of children and young people with SEND, which will launch in 2022. Although still in development, we intend it to include awareness raising, information and training and, crucially, advice and support in making applications for Carer’s Allowance, Disability Living Allowance (DLA) and Personal Independence Payments (PIP). To stay up-to-date on this and other Reaching Families services, sign up to our mailing list by filling in the form on our website: www.reachingfamilies.org.uk/contact.html.

Benefits enquiries

ATTENDANCE ALLOWANCE (AA)

Tel: 0800 731 0122

Textphone: 0800 731 0317

www.gov.uk/attendance-allowance

CARER’S ALLOWANCE

Tel: 0800 731 0297

Textphone: 0800 731 0317

www.gov.uk/carers-allowance-unit

DISABILITY LIVING ALLOWANCE (DLA) (FOR UNDER 16S)

Tel: 0800 121 4600

Textphone: 0800 121 4523

www.gov.uk/disability-living-allowance-children

PERSONAL INDEPENDENCE PAYMENTS (PIP) (AGES 16 TO 64)

Tel: 0800 121 4433 (enquiries)

Tel: 0800 917 2222 (claims)

Textphone: 0800 121 4493 (enquiries)

Textphone: 0800 917 7777 (claims)

www.gov.uk/pip

UNIVERSAL CREDIT

Tel: 0800 328 5644

Textphone: 0800 328 1344

Relayphone: 18001 then 0800 328 5644

Video relay also available for BSL users, see website for details.

www.gov.uk/universalcredit

Blue Badge Scheme (WSCC)

If your child is in receipt of DLA or PIP you may be able to apply for a Blue Badge to help you to park.

Tel: 01243 777653

Email: blue.badges@westsussex.gov.uk

www.westsussex.gov.uk

Bullying

Information and advice for children who are being bullied, and for their parents.

www.westsussex.gov.uk/education-children-and-families/your-space/life/bullying

Carer’s Allowance

See Benefit enquiries above

Carers Support West Sussex

Free, confidential and impartial information and support including benefits advice via their helpline, website and groups. Also provide equipment and assistive technology for disabled people and their carers and the Carers Emergency Contact Card.

Tel: 0300 028 8888

Email: info@carerssupport.org.uk

www.carerssupport.org.uk

Changing Places

Changing Places are fully accessible toilets with an adult-sized changing bench, hoist and space for carers. See website for locations and more info.

Tel: 020 7803 2876

Email:  changingplaces@musculardystrophyuk.org

www.changing-places.org

Child and Adolescent Mental Health Services (CAMHS)

Specialist teams offering assessment and treatment to children aged 0 to 18 who have emotional, behavioural or mental health problems. Referrals must be made by a professional from health, social care or education.

Chichester: 01243 813405

Horsham: 01403 223340

Mid Sussex: 01444 472670

Worthing: 01903 286754

www.sussexpartnership.nhs.uk/service-west-sussex-community-teams

https://sussexcamhs.nhs.uk

Child Development Centres (CDCs)

Centres where staff from various health teams (e.g. paediatricians, physiotherapists and occupational therapists) assess and treat children (birth to 19 years) who have developmental and special needs.

Chichester: 01243 793639

Crawley and Horsham: 01293 600351

Haywards Heath: 01444 414100

Worthing: 01903 286700

Children and Family Centres

Go to www.westsussex.gov.uk/fis and click on ‘family activities and support’ then choose ‘children and family centres’

NB: from January 2022 see Family Hubs.

Citizens Advice

Free, independent, confidential and impartial advice on everything from benefits to money and debt, to housing, health, and law.

Offices in: Burgess Hill, Crawley, East Grinstead, Haywards Heath, Horsham, Shoreham and Worthing

Outreach centres in: Billingshurst, Broadfield, Broadwater, Henfield, Lancing, Pulborough, Roffey, Steyning and Storrington

National advice line tel: 0800 144 8848

Consumer helpline tel: 0808 223 1133

www.citizensadvice.org.uk

www.advicewestsussex.org.uk

Community Equipment Service

Access to equipment is via a GP, occupational therapist, physiotherapist or community nurse. For delivery, collection, repair or servicing of equipment, contact NRS Healthcare.

Tel: 0345 127 2931

www.sussexcommunity.nhs.uk/services

Disability Living Allowance (DLA)

See Benefit enquiries

District and Borough Councils

Adur and Worthing: 01273 263000

Email: helppoint@adur-worthing.gov.uk

Arun: 01903 737500

Email: info@arun.gov.uk

Chichester: 01243 785166

Email: contact@chichester.gov.uk

Crawley: 01293 438000

Email: comments@crawley.gov.uk

Horsham: 01403 215100

Email: customer.services@horsham.gov.uk

Mid-Sussex: 01444 458166

Email: enquiries@midsussex.gov.uk

www.westsussex.gov.uk/about-the-council/your-other-local-councils/district-and-borough-councils

Early Help

Parent carers who need support can ask for help through many channels, including your health visitor, school, local Children and Family Centre/Family Hub or through the Integrated Front Door.

Tel: 01403 229900

Email: WSChildrenServices@westsussex.gov.uk

www.westsussexscb.org.uk

Ethnic Minority Achievement Team (EMAT) and the Traveller Education Support (TES) Service

Works with pupils from Black and Minority ethnic families, Gypsy, Roma and Traveller families and bilingual children and young people.

EMAT: 0330 222 2111

Email: emat@westsussex.gov.uk

TES: 0330 222 2155

Email: tes@westsussex.gov.uk

Family Fund

Grants for families of children with disabilities or serious illness. See website for eligibility criteria.

Tel: 01904 550055

www.familyfund.org.uk

Family Hubs

Go to www.westsussex.gov.uk/fis and click on ‘family activities and support’ then choose ‘family hubs.’

Family Information Service (WSCC)

West Sussex County Council service offering up to date information to families on activities, services and childcare.

Tel: 01243 777807

Email: family.info.service@westsussex.gov.uk

https://familyinfoservice.westsussex.gov.uk

Home-Start

Supports families of children under five, who may be dealing with issues such as SEND, post-natal depression, isolation and health problems. Services include: home visiting, groups and support so families can access other services.

ARUN, WORTHING AND ADUR:

Tel: 01903 889707

admin@home-startawa.org.uk

https://home-startawa.org.uk

CHICHESTER:

Tel: 01243 773477

Email: admin@home-startchichester.org.uk

https://home-startchichester.org.uk

CRAWLEY, HORSHAM AND MID-SUSSEX:

Tel: 01293 416327

Email: info@homestartchams.org.uk

https://homestartchams.org.uk

www.home-start.org.uk

Hospitals with A&E departments

EAST SURREY HOSPITAL

Canada Avenue, Redhill, Surrey

RH1 5RH

PRINCESS ROYAL HOSPITAL

Lewes Road, Haywards Heath

RH16 4EX

ROYAL SUSSEX COUNTY HOSPITAL

Eastern Road, Brighton

BN2 5BE

ST RICHARD’S HOSPITAL

Spitalfield Lane, Chichester

PO19 6SE

WORTHING HOSPITAL

Lyndhurst Rd, Worthing

BN11 2DH

Integrated Front Door (IFD)

Single point of contact for all safeguarding concerns regarding children and young people in West Sussex. Includes access to Early Help (for over 18s, see Adults’ CarePoint)

Tel: 01403 229900

Out of hours: 0330 222 6664

Email: WSChildrenServices@westsussex.gov.uk

www.westsussex.gov.uk/social-care-and-health/social-care-support/children/contact-us-for-childrens-social-care-support

Jobcentre Plus

Helps people find jobs and/or claim benefits. Offices in Bognor Regis, Chichester, Crawley, Haywards Heath, Horsham, Littlehampton and Worthing.

Tel: 0800 169 0190

Textphone: 0800 169 0314

www.gov.uk/contact-jobcentre-plus

Minor Injuries

Units for the assessment and treatment of minor injuries and illnesses, open 9 a.m. to 5 p.m. For very young children and serious issues go to A&E.

BOGNOR WAR MEMORIAL HOSPITAL

Shripney Road, Bognor Regis

PO22 9PP

HORSHAM HOSPITAL

Hurst Road, Horsham

RH12 2DR

QUEEN VICTORIA HOSPITAL

Holtye Road, East Grinstead

RH19 3DZ

Multi-Agency Safeguarding Hub (MASH)

Now known as Integrated Front Door (IFD).

NHS

Official NHS website. Includes information on conditions, treatment and support.

www.nhs.uk

NHS England

Sets the priorities and direction of the NHS in England.

Tel: 0300 311 2233 (customer contact)

Email: england.contactus@nhs.net

www.england.nhs.uk

NHS Sussex Community (NHS Foundation Trust)

Main provider of community NHS health and care in Sussex

Tel: 01273 696011

www.sussexcommunity.nhs.uk

Occupational Therapy (OT)

Initial referral needed from a health or education professional. Parents and professionals can re-refer any child that has previously been seen by an OT in West Sussex.

Chichester and Worthing: 01903 286716

Crawley and Horsham: 01293 600300 ext. 4049

Haywards Heath: 01444 414100

Assessments for adults can be requested through your GP or the Adults’ CarePoint.

Out of Hours GP service

NHS non-emergency number

Tel: 111, free from landline or mobile.

Personal Independence Payment (PIP)

See Benefits Enquiries

Portage

A home-visiting educational service for very young children with significant support needs.

Crawley and East Grinstead: 01293 572480

Chichester: 01243 536182 or 01243 642880

Horsham: 01243 536182

Mid Sussex: 01444 243150

Worthing: 01903 242558

www.portage.org.uk/west-sussex-portage-service

Preparing for Adulthood

Funded by the Department of Education, the website contains many resources to help parent carers and young people with SEND prepare for adulthood. It includes the ‘Preparing for adulthood pathways’ that the Year 9 (transition) annual review paperwork is based on and a downloadable information pack.

Tel: 01225 789135

Email: info@preparingforadulthood.org.uk

www.preparingforadulthood.org.uk

SENAT (Special Educational Needs Assessment Team)

Deals with requests for Education Health and Care Needs Assessments, oversees the writing and review of Education Health and Care Plans (EHC Plans).

SENAT NORTH

Covers northern part of the county including Burgess Hill, Crawley, Cuckfield, East Grinstead, Haywards Heath and Horsham.

Tel: 0330 222 2722

Email: SENAT.North@westsussex.gov.uk

SENAT SOUTH

Covers the southern part of the county, including Angmering, Bognor Regis, Chichester, Hove, Midhurst, Littlehampton, Petworth, Portslade, Shoreham, Steyning and Worthing.

Tel: 0330 222 3120

Email: SENAT.South@westsussex.gov.uk

www.westsussex.gov.uk/education-children-and-families/special-educational-needs-and-disability-send/support-and-advice/send-information-for-professionals/request-an-education-health-and-care-needs-assessment

SEND Code of Practice (2015)

Statutory guidance for special educational needs and disabilities, including process for EHC Needs Assessments and EHC Plans.

www.gov.uk/government/publications/send-code-of-practice-0-to-25

SEND Information, Advice and Support Service (SENDIAS)

Statutory service providing impartial information, advice and support to parent carers of children with SEND and young people with SEND.

Tel: 0330 222 8555

Email: send.ias@westsussex.gov.uk

www.westsussexsendias.org

Sensory Support Team (SEN and Inclusion Service)

Provides services to children and young people aged 0 to 19 with hearing, sight or multi-sensory impairments.

Tel: 01903 270430

Email: sensory.support@westsussex.gov.uk

www.westsussex.gov.uk/education-children-and-families/special-educational-needs-and-disability-send/support-and-advice/support-for-school-age-children-with-send

SOS!SEN

Free independent and confidential help for parents and others looking for information and advice on special educational needs provision. Check website for helpline opening times.

Tel: 020 8538 3731 or 0300 302 3731 (term time only)

www.sossen.org.uk

Universal Credit

See Benefits Enquiries

Urgent Treatment Centre, Crawley

Treats most injuries or illnesses that are urgent but not life threatening, open 24 hours, every day.

West Green Drive, Crawley, RH11 7DH

West Sussex Connect to Support (WSCC)

Information and advice to help with independence and well-being with links to services, products, groups and activities in West Sussex.

www.westsussexconnecttosupport.org

West Sussex County Council (WSCC)

COMPLAINTS AND COMMENTS

(ask for the customer relations team)

Tel: 01243 777100

Email: feedback@westsussex.gov.uk

DISABLED PARKING (BLUE BADGE)

01243 777653

FAMILY INFORMATION

01243 777807

GENERAL ENQUIRIES

01243 777100

PUPIL ADMISSIONS OFFICES

0333 014 2903

www.westsussex.gov.uk

West Sussex Local Offer (WSCC)

Local authority website providing information to West Sussex families who have children aged from birth to 25 years with SEND, see Using this guide with the Local Offer.

www.westsussex.local-offer.org

West Sussex Parent Carer Forum (WSPCF)

Represents parent carer views to the local authority, healthcare services and other organisations in the county to help shape SEND provision for children and young people in the county.

Tel: 01903 726188

Email: office@wspcf.org.uk

www.wspcf.org.uk

Wheelchair and Seating Service, NHS

Assesses and provides wheelchairs and seating to people with life-long and long-term disabilities. Please note that referrals must be made by health or social care. After a referral is accepted, people are registered with the service. For reassessment and advice you can then contact your local team on the numbers below.

BOGNOR

01243 623650

Email: sc-tr.wheelchairservicebognor@nhs.net

HORSHAM

01403 620454

Email: sc-tr.wheelchairservicehorsham@nhs.net

WORTHING

01273 265850

Email: sc-tr.wheelchairserviceworthing@nhs.net

REPAIRS

AJM Healthcare, Hailsham

Tel: 01323 847250

Email: service@ajmhealthcare.org

www.sussexcommunity.nhs.uk/services

Section four: Directories

Local directory

Note: listings marked (SB) are Short Breaks providers.

During the Covid-19 pandemic some activities have been postponed, reduced in numbers or delivered online. Check websites or contact organisations to check whether changes and restrictions are in place.

Action for Deafness

Delivers adult audiology services for adults in West Sussex on behalf of the NHS and provides advice, support, information to enable deaf people to lead independent lives.

Tel: 01444 415582

Email: info@actionfordeafness.org.uk

www.actionfordeafness.org.uk

Active Sussex

Aims to increase participation in sport and physical activity, incorporating Sussex Disability Sports Network.

Tel: 01273 643869

Email: info@activesussex.org

www.activesussex.org

Adur Special Needs Project (ASNP) (Lancing)

Out of school respite care and play schemes for young people with special needs aged from five to 15 years.

Tel: 07788 239634

Email: info@adurspecialneedsproject.org.uk

www.adurspecialneedsproject.org.uk

Advance Centre (East Grinstead)

Teaching institute for parents in the methods of the Scotson Technique (TST) which seeks to enhance oxygen supply to the body tissues to help with various conditions and disabilities. Also offers Hyperbaric Oxygen Therapy.

Tel: 01342 311137

Email: info@advancecentres.com

www.advancecentres.com

The Advocacy Service

Works directly with young people to ensure their wishes and feelings are heard and given weight in the decisions that adults (carers and professionals) make about their lives. Advocacy is independent, young person-led and issue based.

Tel: 0330 222 8686

Email: AdvocacyService@westsussex.gov.uk

www.westsussex.gov.uk/education-children-and-families/your-space/life/advocacy

Air Arena (Chichester)

Trampolining and interactive activities for all ages. Dedicated SEND (Helping Hands) session and home educator sessions.

Tel: 01243 940530

Email: info@airarena.co.uk

https://airarena.co.uk

Albion in the Community (SB)

Runs inclusive sports sessions for young people, disability specific clubs and clubs for wheelchair users.

Tel: 01273 668590

Email: info@albioninthecommunity.org.uk

www.albioninthecommunity.org.uk

Aldingbourne Trust

Individually tailored care and support for people with learning disabilities and their families. Offers a wide range of services from supported living to job training and life skills programmes.

Tel: 01243 544607

Email: info@aldingbourne.org

www.aldingbournetrust.co.uk

Allsorts Youth Project West Sussex

Safe space for LGBT+ (lesbian, gay, bisexual, trans and those exploring their sexual orientation and/or gender identity) young people aged 11 to 25 in Horsham, Chichester and Worthing to meet in a comfortable and confidential setting and access support.

Tel: 01273 721211

Email: info@allsortsyouth.org.uk or parents@allsortsyouth.org.uk

www.allsortsyouth.org.uk/westsussex

Angling4Education (SB)

Delivers fun educational holiday and weekend provision around fishing and the environment for young people with SEND and their families.

Tel: 01273 968126 or 07795 410812

Email: angling4education@gmail.com

www.angling4education.com

Apprenticeships in West Sussex

Helps parent carers and young people search for apprenticeship training in the county.

Email: info@sctp.org.uk

www.apprenticeships-in-sussex.com

Ariel Othello’s

Dance, drama, music and singing for children and young people with special needs. Othello Juniors (seven to 19 year olds) and Othello Adults (16+). Meets at various venues across West Sussex.

Tel: 01444 250407

Email: contactus@arielct.co.uk

www.arielct.com/special-needs

Arun Counselling Service (Littlehampton)

Confidential counselling service – no one is turned away if they cannot afford to pay. Sessions available daytime, plus some evenings and Saturday mornings.

Tel: 01903 714417

Email: info@aruncounselling.com

www.aruncounselling.com

Arun Sports Association for the Disabled (ASAD)

Sports club for disabled people aged nine years and over. Meets at venues in Arundel and Bognor Regis.

Tel: 07958 134720,

Email: enquiries@A-S-A-D.org.uk

www.a-s-a-d.org.uk

Ashdown Centre (Guild Care, Worthing) (SB)

Offers short breaks on weekends, and during the school holidays. Ashdown Club (age 5 to 12), Ashdown Youth Club (12 to 18 years), and Ashdown Siblings (age 5 to 12). Open to children with a range of additional needs, including autistic spectrum conditions, cerebral palsy and Down syndrome.

Tel: 01903 327327

Email: via contact form on website

www.guildcare.org/ashdown-centre

Aspens

Providing a range of support for children, young people and adults with a range of disabilities and complex needs, as well as those on the autism spectrum.

Tel: 01243 214120

Email: childrenreferrals@aspens.org.uk

www.aspens.org.uk

Autism Support Crawley

Support group for parents and carers of children and adults on the autism spectrum or with social communication difficulties. Also has a Facebook group. See website for dates and times of meetings.

Tel: 07596 737741

Email: admin@autismsupportcrawley.co.uk

www.autismsupportcrawley.co.uk

Barnardo’s Moving Forward Project

One-to-one support, group work and workshops promoting health, life skills and independence in young people aged 14 (must be in year 10) to 25 with a learning difficulty or disability.

Tel: 07984671457 or 07872 049000

Email: moving.forward@barnardos.org.uk

www.barnardos.org.uk

Belltree Music Therapy CIC (Hove)

A professional music therapy service for people of all ages and abilities in Brighton and Hove and across Sussex. There are also a series of online videos and resources.

Tel: 01273 776454

Email: info@belltree.org.uk

www.belltree.org.uk

Benefits

See Essential contacts

Bevern Trust (Lewes) (18+)

Enabling people with profound disabilities to live their lives to the full.

Tel: 01273 400752

Email: info@beverntrust.org

www.beverntrust.org

Blatchington Court Trust

Information, support, counselling and IT training for visually impaired people under the age of 30.

Tel: 01273 727222

Email: info@blatchingtoncourt.org.uk

www.blatchingtoncourt.org.uk

Blue Badge applications and renewals

See Essential contacts

Blue Starfish Club (Worthing) (16+)

Club nights run three times a year, providing those with learning disabilities aged 16+ with an opportunity to socialise and show their skills as DJs and musicians. Run by Worthing Mencap and others.

Tel: 01903 202030

www.worthingmencap.org/bluestarfish.php

Bognor Regis Autism and SEND Support (BRASS)

Parent-led support group for families of children with additional needs. Holds coffee mornings, play sessions and has a Facebook group.

Email: brass18@outlook.com

https://brass18.website2.me

Branching Out (Westgate Leisure Centre, Chichester)

Inclusive multi-sports club for children aged five to 18 with SEND and their families. Hoist assisted changing facilities.

Tel: 01243 785651

www.everyoneactive.com/centre/westgate-leisure-centre

The Bridge Leisure Centre (Broadbridge Heath, Horsham)

Has a purpose built sensory room designed for under fives and disabled children and adults. Call number below to arrange private hire.

Tel: 01403 211311

https://placesforpeopleleisure.org/centres/the-bridge-leisure-centre

Brooklands Park and playground (Worthing)

Has an inclusive playground for children and young people. The wheelchair swing can be unlocked with a RADAR key. Western Road, Worthing, BN15 8SA

www.adur-worthing.gov.uk/parks/find/worthing/brooklands-park

The Butterfly Project

Supports adults with learning difficulties, autism and disabilities in work and community activities.

Tel: 01403 248580

Email: admin@thebutterflyprojecthorsham.co.uk

www.thebutterflyprojecthorsham.co.uk

Buzz Buddies

A social group run by Stay Up Late and Extratime that supports adults aged 18 to 25 with learning disabilities to meet up and enjoy evening activities together.

Email: info@stayuplate.org

https://gigbuddies.org.uk/buzz-buddies

Carousel (Brighton)

Supports artists with learning disabilities to explore and develop their artistic talents in film, music, digital and broadcast media.

Tel: 01273 234734

Email: enquiries@carousel.org.uk

www.carousel.org.uk

Chailey Clinical Services, Sussex Community NHS Foundation Trust

Specialist multi-disciplinary team (MDT) clinical care services for children with complex neurodisabilities. See the Rehabilitation Engineering Service. See also Finches.

Tel: 01825 722112

Email: sc-tr.chaileyenquiries@nhs.net

www.sussexcommunity.nhs.uk/services/servicedetails.htm?directoryID=16344

Chailey Heritage Foundation

Offers a wide range of services to young adults with disabilities to optimise their potential. Includes the Future Life Skills Centre, day provision, accommodation and Futures Hub.

Tel: 01825 724444

Email: office@chf.org.uk

www.chf.org.uk/services-for-adults.html

Challengers (Chichester) (SB)

Activity scheme for 13 to 18 year olds with SEND. Runs on Saturdays and also during Easter and summer holidays.

Tel: 07779 440084

Email: ChichesterYouthscheme@disability-challengers.org

https://disability-challengers.org/what-we-do/youthschemes/chichester

Chanctonbury Community Playscheme (CCPS) (SB)

A volunteer-led playscheme running for four weeks of the summer holidays. Open to children aged four to 19 years with an EHC Plan. Places need to be applied for.

Tel: 07455 131462

Email: ccpsorganiser@gmail.com

www.facebook.com/ccpsplayscheme

Charlotte’s Tandems

Free loan of tandems and tag-alongs to people with SEND who are unable to ride a bike safely alone. Includes accessories (e.g. helmets) if needed.

www.charlottestandems.weebly.com

ChatHealth

Confidential text messaging service for young people aged 11 to 19 to ask the school nursing team for help on a range of issues or make an appointment with a school nurse.

Text: 07480 635424

www.sussexcommunity.nhs.uk/services/chathealth-text-messaging-service/108923

Chestnut Tree House Children’s Hospice (Arundel)

Children’s hospice for children and young people aged from birth to 19 years with progressive life-shortening conditions. Also runs support groups for siblings of children cared for by the organisation and those who have been bereaved.

Tel: 01903 871800

Email: hello@chestnut-tree-house.org.uk

www.chestnut-tree-house.org.uk

Chichester Careline

Various support services for carers in the Chichester district, including the Carers Emergency Alert Card and personal alarms.

Tel: 01243 778688

Email: chichestercareline@ppptakingcare.co.uk

www.taking.care/chichester

Chichester Counselling Services (18+)

Affordable counselling for adults.

Tel: 01243 789200

Email: office@ccs-counselling.org.uk

www.ccs-counselling.org.uk

Chichester Down Syndrome Support Group

Support group for families of people with Down syndrome in Chichester, Bognor and surrounding villages.

Tel: 07796 952146

Email: cdssgwelcome@gmail.com

www.chichesterdownsyndrome.org.uk

Chichester Festival Youth Theatre

Includes sessions in Chichester and Horsham specifically for young people with disabilities.

Tel: 01243 784437

Email: cfyt@cft.org.uk

www.cft.org.uk/take-part/children-young-people

Chichester Golf Club

Has a wheelchair-accessible outdoor adventure golf course.

Tel: 01243 536666

Email: info@chichester-golf.com

https://chichestergolf.com

Children and Young People’s Continence Team

A nurse-led team who provide a specialist continence service to children and young people. Supports families whose children have ongoing difficulties with bladder or bowel control, constipation, withholding and other toileting issues

Tel: 01273 242145

Email: sc-tr.childrenscontinence@nhs.net

www.sussexcommunity.nhs.uk/services/childrens-continence-team-west-sussex/108931

Children’s Audiology

Specialises in the assessment and management of hearing for children from birth to 16 years. Referrals can be made by school SENCOs or other health professional.

CRAWLEY AND HORSHAM

Tel: 01293 301000

Email: SC-TR.childrensaudiologycrawley@nhs.net

MID SUSSEX

Tel: 01444 414100 ext. 4856

Email: SC-TR.chidrensaudiologymidsussex@nhs.net

WORTHING AND CHICHESTER

Tel: 01903 285013

Email: wshnt.audiologydepartment@nhs.net

Children’s Community Nursing Team

Home and community-based nursing for children and young people from birth to 19 years, treating: acute short-term conditions; long-term conditions; complex health needs; disability and continuing care needs; and children with life-limiting and life-threatening conditions.

Chichester: 01243 793619

Crawley: 01293 301013

Worthing: 01273 696011 ext. 6200

www.sussexcommunity.nhs.uk/services/all-services.htm?postid=108930

Children’s Continuing Care and Health-led Short Breaks

Continuing care at home – nursing and care support in the home for children with complex health needs. Health-led short breaks – nursing and care support away from home for children with complex health needs. Referral is via health or social care professionals.

Tel: 01903 708609

Email: wsxccg.childrensccteam@nhs.net

www.sussexcommunity.nhs.uk/services/all-services.htm?postid=108932

Cineworld Cinemas (Chichester, Crawley, Brighton)

Autism-friendly screenings on the first Sunday of every month.

Tel: 0333 003 3444

Email: customer.services@cineworld.co.uk

www.cineworld.co.uk

Circles Network

A charity working to promote social inclusion and personal empowerment. Services offered include advocacy, transition planning and parent support.

Tel: 01293 512257

Email: info.southeast@circlesnetwork.org.uk

www.circlesnetwork.org.uk

Coastal Enterprises

Day service for adults who have learning disabilities, focusing on support and developing independence.

Tel: 01903 239460

Email: martin.fletcher@westsussex.gov.uk

Cobnor Activities Centre Trust

Outdoor activities centre for children and young people with and without special needs.

Tel: 01243 572791

Email: sail@cobnor.com

www.cobnor.com

County Deaf Services

Advice, assessments and arranges specialist equipment for adults who are deaf or have hearing loss. For further information, go to the website below and search for ‘county deaf services’. You can also contact the team via the Adults’ CarePoint.

Tel: 01243 642121

SMS text: 07736 093462

Minicom: 01403 275515

Email: county.deaf.services@westsussex.gov.uk

www.westsussexconnecttosupport.org

Crawley BMX Track

Inclusive BMX track with specially adapted bikes and part-time instructors.

Tel: 01293 585350

Email: sportsdevelopment@crawley.gov.uk

www.crawley.gov.uk

Crossroads Care

See Tu Vida

Cruse Bereavement Care

Counselling, information and support for bereaved people.

Tel: 0300 311 9959

Email: westsussexarea@cruse.org.uk

www.cruse.org.uk

Cycall (Worthing)

Offers disabled children and adults and people with health issues the chance to experience cycling using adapted bicycles. Sessions are run at Brooklands Park, Worthing. No charge.

Tel: 07784 918122

Email: cycallworthing@gmail.com

www.cycall.info

Dame Vera Lynn Children’s Charity

Early intervention based on the principles of conductive education, for families of under-fives with cerebral palsy and other motor learning impairments.

Tel: 01444 473274

Email: info@dvlcc.org.uk

https://dvlcc.org.uk

Dome Cinema (Worthing)

Cinema providing disability-friendly screenings for those with learning disabilities or on the autistic spectrum.

The screen has two wheelchair spaces, pre-booking is advisable. Parent carers must stay.

Tel: 01903 823112

Email: office@domeonline.co.uk

www.domecinema.co.uk

Drusillas Park

Accessible zoo located in Alfriston, near Eastbourne.Changing Places toilet located in the Go Wild! area, next to the Amazon Adventure soft play.

Tel: 01323 874100

Email: info@drusillas.co.uk

www.drusillas.co.uk

Duke of York’s Cinema (Brighton)

Cinema with four wheelchair spaces, an induction loop, some subtitled (captioned) screenings and autism/disability-friendly screenings once a month. Guide dogs also welcome.

Tel: 0871 902 5747 (box office) or

02072 947908 (accessibility hotline)

Email: enquiries@picturehouses.co.uk

www.picturehouses.com

Early Birth Association

Charity supporting babies, families and staff in neonatal care at Trevor Mann Baby Unit in the Royal Sussex County Hospital, Brighton, and the Special Care Baby Unit at the Princess Royal Hospital, Haywards Heath.

Email: info@earlybirth.co.uk

www.earlybirth.co.uk

Esteem (Shoreham)

Runs a number of inclusive services for young people aged 14 to 26 including a weekly The Drop-In where they can socialise with others, structured activities such as mini golf and kayaking, counselling and walk and talks to boost well-being. Also offers a Volunteer 2 Work scheme to help young people gain skills and experience, as well as training workshops and a Mentor Me scheme.

Tel: 074970 447333

Email: hello@esteem.org.uk

http://esteem.org.uk

Everyman cinema (Horsham)

Offer some relaxed screenings for people with additional needs including autism and learning disabilities.

Tel: 0872 436 9060

www.everymancinema.com/general-faqs

Extratime

After school club and summer holiday schemes in West Sussex for four to 18 year olds with or without additional needs or disabilities.

Tel: 01273 420580

www.extratimebrighton.org.uk/west-sussex

Facebook support groups

Some support groups also hold regular meet-ups and events. Search for the group name in Facebook and click ‘join group’ or ‘follow.’ Some groups have a website, too.

AUTISM BY THE SEA (WORTHING)

Contact: Clare Greaves

AUTISM SUPPORT CRAWLEY

Tel: 07596 737741

Email: admin@autismsupportcrawley.co.uk

https://autismsupportcrawley.co.uk

BOGNOR REGIS AUTISM AND SEND SUPPORT (BRASS)

Email: brass18@outlook.com

https://brass18.website2.me

BRIGHTON, HOVE AND WEST SUSSEX DEAF CHILDREN’S SOCIETY

Tel: 07519 869878

Email: bhwsdcsoc@btinternet.com

CHICHESTER DOWN SYNDROME SUPPORT GROUP

https://chichesterdownsyndrome.org.uk

HYPERACTIVE CHILDREN’S SUPPORT GROUP

https://hacsg.org.uk

PATH – PARENTING AUTISM TOGETHER IN HORSHAM

Contact: Sarah Willis

PUZZLE PIECES (BOGNOR)

REACHING FAMILIES

www.reachingfamilies.org.uk/fbgroup.html

SPECIAL FAMILIES EAST GRINSTEAD

Email: admin@specialfamilieseg.org

www.specialfamilieseg.org

WEST SUSSEX ADHD SUPPORT (CRAWLEY)

Email: crawley@adhdwestsussex.org

https://en-gb.facebook.com/groups/CrawleyADHD

WEST SUSSEX ADHD SUPPORT GROUP (WORTHING)

Contact: Sharon Tel: 07765 262524 or 07875 298976

Email: worthing@adhdwestsussex.org

Family Support Work

Charity offering support to families in Sussex with children aged up to 18 facing crisis or who need help to overcome multiple complex issues. Services include home visits, support groups, drop-ins, play opportunities for children, and supported family breaks with community workers. Also provides food, clothing and toys where needed.

Tel: 01273 832963

Email: admin@familysupportwork.org.uk

www.familysupportwork.org

Ferring Country Centre (near Worthing)

Provides training and work experience for people with learning difficulties. Gardens, horse riding centre and café, soft play and small animal farm. Riding therapy for children and adults with disabilities.

Tel: 01903 245078

Email: office@ferringcountrycentre.org

www.ferringcountrycentre.org

Finches (Burgess Hill)

Fully adapted Chailey Clinical Services bungalow offering residential respite breaks for children and young people with complex health needs. Full NHS nursing care on site. Referral required from an NHS clinician or the health/local authority lead manager responsible for buying specialist services.

Tel: 01825 722112 (Chailey Clinical)

Email: sc-tr.chaileyreferrals@nhs.net

FindItOut Centres

Offers information, advice and guidance to young people aged 13 to 25 online and in person. Please check the website below for further information.

GENERAL CONTACT DETAILS

Tel: 01403 229900

Email: WSChildrenServices@westsussex.gov.uk

www.westsussex.gov.uk/education-children-and-families/your-space/places-to-go/finditout-centres/

Flip Out (Chichester)

Trampolining, soft play and one-to-one therapy for all ages. Dedicated, discounted weekly SEND sessions. Portable hoist available.

Tel: 01243 256590

Email: chichester@flipout.co.uk

www.flipout.co.uk/locations/chichester

Food Banks

There are numerous food banks in West Sussex for people who have no other means of assistance in a crisis. Contact one of the organisations below or your local Children and Family Centre/Family Hub.

As well as emergency food some also provide holiday lunch packs for children.

Tel: 0344 477 1171

www.advicewestsussex.org.uk

TRUSSELL TRUST (FOOD BANK NETWORK)

Phone to be put in touch with your nearest food bank, or use the search box on the website. It is necessary to be referred with a food bank voucher by a local organisation such as a school, GP or advice agency.

Tel: 01722 580180

Email: enquiries@trusselltrust.org

www.trusselltrust.org

Footloose Dance Group (Crawley)

Dance and movement classes for children and young adults with learning disabilities. Term time only.

Tel: 07912567481 (Sam)

Email: samantha.bloom@outlook.com

Forest Flyers FC (Horsham)

Football club for seven to 18 year olds with disabilities.

Tel: 07715 320631

Email: kimberly_roberts12@hotmail.com

Gaston Farm

Child-friendly community farm near Slindon. Has disabled parking and is wheelchair accessible.

Tel: 01243 814269

Email: info@gastonfarm.com

www.gastonfarm.com

Gatwick Airport

Offers a range of services for people with disabilities, special needs or reduced mobility: Changing Places toilets; Eagle hoist for assistance boarding the aircraft (must be booked 24 hours before travelling); a private oxygen supply booking service for passengers requiring oxygen therapy abroad; special assistance help points; sunflower lanyards for people with autism or other hidden disabilities who wish to wear one as a sign to staff that they may need extra help or understanding; a sensory room designed for people with autism, dementia, cognitive impairment or other special needs. NB if you need help getting to your flight, you should contact your airline at least 48 hours before you fly to book assistance.

Tel: 01293 507500

Email: hiddendisability@gatwickairport.com

www.gatwickairport.com/at-the-airport/passenger-services/special-assistance/

Gig Buddies

Founded by Stay Up Late, it pairs up people aged 18+ with and without learning disabilities and/or autism who have similar interests, so they can go to gigs and other cultural activities together. It also runs Sports Buddies, which pairs up people to exercise and do sports activities together.

https://gigbuddies.org.uk

Golden Lion Children’s Trust

Days out for children with special needs and disabilities and disadvantaged young people.

Tel: 01273 891963

Email: enquiries@glct.org.uk

www.glct.org.uk

Grace Eyre Foundation (18+)

Provides various services designed to help adults with learning disabilities access community opportunities including sports, learning, leisure, supported living and housing.

Tel: 01273 201901

Email: enquiries@grace-eyre.org

www.grace-eyre.org

Guild Care (Worthing)

Provides a range of services and social clubs. Can also assist families and carers with support, information and advice (see Ashdown Clubs).

Tel: 01903 528600

www.guildcare.org

Gully’s Days Out (Albion in the Community)

Access through an annual membership fee to some of Sussex’s top attractions and leisure facilities for children and young people with additional needs.

Tel: 01273 668590

Email: gullysdayout@albioninthecommunity.org.uk

www.albioninthecommunity.org.uk/disability/gullys-days-out

Gym Joeys (Bognor Regis)

Gymnastics and play sessions for children aged one to five years, with and without SEND.

Tel: 07799 836341

Email: info@gymjoeys.com

www.gymjoeys.com

Hack Horsham

Runs regular inclusive STEAM (Science, Technology, Engineering, Arts, Maths) workshops and events where children and young people can work on everything from Minecraft to coding and simple circuits

Email: collaborate@hackhorsham.org.uk

www.facebook.com/hackhorsham

Happy Minds Sussex and Happy Kids (Shoreham-by-Sea)

Offers small group sessions for kids, teens and families to provide support with various emotional needs such as stress, anxiety and low self-esteem. Also offers preventative sessions. See website for contact form.

www.happykidssussex.org

Head2Head Theatre (SB)

Interactive, multi-sensory, ‘walkabout’ pantomimes and performances for children with SEND aged two and up.

Tel: 01372 278021

Email: office@h2hsensorytheatre.com

www.h2hsensorytheatre.com

Health Visiting Team (Healthy Child Programme)

Providing support from pregnancy through to age 19, this team includes school nurses and can help with various issues including: feeding and nutrition, behaviour and sleep management, parenting issues, emotional health and child protection issues.

www.sussexcommunity.nhs.uk/services/healthy-child-programme-west-sussex/108963

Healthwatch West Sussex

Independent organisation giving people in West Sussex an opportunity to have their say about health and care services. (Also see IHCAS.)

Tel: 0300 012 0122

Email: helpdesk@healthwatchwestsussex.co.uk

www.healthwatchwestsussex.co.uk

Hidden Disabilities: Sunflower Lanyard Scheme

Businesses taking part in this scheme offer sunflower lanyards to people with hidden disabilities including ADHD, autism and dementia. Staff are trained to offer wearers extra assistance. For more information, search online for ‘hidden disability lanyard’.

https://hiddendisabilitiesstore.com

HOPE Charity Project (Southwater, Horsham)

Supports young people aged ten to 18 who are experiencing emotional/mental health issues. Services include one-to-one and group/family counselling, animal therapy and creative therapies.

www.hopecharityproject.org

Horsham District Junior Disability Swimming Programme

Provides a range of sessions across the district at Billingshurst and Steyning Leisure Centres, the Pavilions in the Park in Horsham and at Bluecoat Sports Centre, Christ’s Hospital. Please call or email Paul Taylor on the details below for more information.

Tel: 07764 146339

Email: paul.taylor@horsham.gov.uk

www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities click on ‘inclusive swimming lessons.’

Horsham District Sports Development Reaching Higher Project (SB)

Weekly term time after-school and weekend short breaks sports and arts activities for young people with SEND aged five to 25 and their siblings. Activities include: dance; karaoke; digital video production; DJ’ing; Wheels for ALL inclusive cycling; rebound therapy and wheelchair basketball.

Tel: 07764 146339

Email: paul.taylor@horsham.gov.uk

www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities/reaching-higher-project

Hyperactive Children’s Support Group

Information and support for families of children who have ADHD or are hyperactive.

Tel: 01243 539966

Email: hacsg@hacsg.org.uk

www.hacsg.org.uk

Independent Health Complaints Advocacy Service (IHCAS)

Healthwatch’s complaints advocacy service, which can support people to make a complaint to the NHS.

Tel: 0300 012 0122

Email: ihcas@healthwatchwestsussex.co.uk

www.healthwatchwestsussex.co.uk/help-making-complaint

Independent Lives

Information, care and support services designed to enable people with care needs to be independent. Direct payments/personal budget support and payroll service.

Tel: 01903 219482

Email: info@independentlives.org

www.independentlives.org

K2 Leisure Centre, Crawley (Everyone Active)

Recreational play, sports activities and swimming lessons for all, including those with special needs/disabilities.

Tel: 01293 585300

www.everyoneactive.com/centre/k2-crawley

Kamelia Kids

Inclusive day nursery for children of all abilities aged from 0 to 6 years.

Tel: 01903 504077

www.kameliakids.org.uk

Kangaroos (Haywards Heath) (SB)

After-school clubs, weekend and holiday playschemes for children (aged 6+) and young adults with SEND. Activities are tailored to ages and abilities. Also runs Saturday ‘stay and play’ sessions for children under five with additional needs (including those without a formal diagnosis).

Tel: 01444 459108

Email: info@kangaroos.org.uk

www.kangaroos.org.uk

KIDS (SB)

Short breaks to help disabled children aged six to 18 years to go out into the community and access groups.

Tel: 01329 312312

Email: southern.shortbreaks@kids.org.uk

www.kids.org.uk/chichester-short-breaks

Kids Blossom (Worthing)

Provides Saturday, after school and holiday clubs for children with additional needs.

Tel: 01903 357052 or 07500 269177

Email: info@kidsblossom.co.uk

https://kidsblossom.co.uk

Learning and Behaviour Advisory Team (LBAT) (WSCC)

Supports children up to the age of 16, their families and schools where learning and/or behaviour difficulties are affecting progress.

https://westsussex.local-offer.org/services/229

https://schools.westsussex.gov.uk/Services/5926

Learning Assessment and Neurocare Centre (LANC)

Works with children, young people and adults with complex neurodevelopmental difficulties.

Tel: 01403 240002 or 01403 260900

Email: info@lanc.uk.com

www.lanc.org.uk

Learning Disabilities Health Facilitation Team (NHS)

Nursing team that supports people aged 14+ with diagnosed learning disabilities with accessing health care, such as a hospital visit or dental care. Accepts referrals from parents and professionals, but those accessing the service must be on the learning disabilities register at their GP surgery. Your child should be automatically added to the register when they get a diagnosis but you may want to check with your GP to ensure they have been added.

Tel: 01403 620438 ext.7600

www.sussexcommunity.nhs.uk/services/learning-disabilities-health-facilitation-team-west-sussex/108995

Level Water (Billingshurst, Burgess Hill, Hayward’s Heath, Horsham and Shoreham)

Affordable one-to-one swimming lessons for children aged four to 11 who cannot swim ten metres and have a physical disability or sight/visual impairment. They do not currently support children with substantial learning, social or behavioural difficulties. Please apply for lessons via their website.

Email: contact@levelwater.org

www.levelwater.org

Libraries

A West Sussex library card will give your child free access to a range of books and online resources, as well as fun activities and events. For more information see:

www.westsussex.gov.uk/libraries

Angmering: 01903 772682

Arundel: 01903 883188

Billingshurst: 01403 783145

Bognor Regis: 01243 382470

Broadfield: 01293 543298

Broadwater: 01903 233244

Burgess Hill: 01444 255452

Chichester: 01243 777351

Crawley: 01293 651751

Durrington: 01903 260439

East Grinstead: 01342 332900

East Preston: 01903 786118

Ferring: 01903 241811

Findon Valley: 01903 872213

Goring: 01903 244300

Hassocks: 01273 842779

Haywards Heath: 01444 255444

Henfield: 01273 493587

Horsham: 01403 224353

Hurstpierpoint: 01273 832609

Lancing: 01903 839056

Littlehampton: 01903 716450

Midhurst: 01730 716671

Petworth: 01798 342274

Pulborough: 01798 872891

Rustington: 01903 785857

Selsey: 01243 602096

Shoreham-by-Sea: 01273 467966

Southbourne: 01243 375924

Southwater: 01403 734660

Southwick: 01273 592150

Steyning: 01903 270330

Storrington: 01903 839050

Willowhale: 01243 265712

Witterings: 01243 673484

Worthing: 01903 704809

www.westsussex.gov.uk/find-my-nearest/library

Lifelong Services

Works with children and adults who have a lifelong disability acquired before the age of 25 (for example a learning disability, autism, physical or sensory disability or acquired brain injury) who require social care support. The Lifelong Service works in partnership with the disabled person and their family to offer early intervention; to build on an individual’s strengths in order to help them to develop skills and independence; to build links with the individual’s community; promote and maintain safety and good health; and facilitate employment for young people and adults. You can contact the Lifelong Service via the Integrated Front Door (IFD).

Lizzie’s Craft Club (Sidlesham, Chichester)

Craft club for children aged four to 11 years of all abilities and their siblings in a custom-built, wheelchair accessible art studio.

Tel: 07900 631527

Email: lizzie@lizziebaily.com

www.lizziebaily.com

Local support

Local organisations offering support to people during a crisis. Some offer specific services for people facing homelessness, while others offer a wider range of support. See websites for further information.

CHICHESTER AND ARUN – STONEPILLOW HOSTELS

Advice and support for homeless people to improve health and wellbeing and sustain independent living.

Tel: 01243 537934

Email: admin@stonepillow.org.uk

https://stonepillow.org.uk/projects/local-assistance

CRAWLEY DISTRICT – CRAWLEY OPEN HOUSE

Support for people suffering from homelessness, unemployment or other social exclusion. Offers advice, outreach work and a drop-in day centre.

Tel: 01293 447702

Email: info@crawleyopenhouse.co.uk

www.crawleyopenhouse.co.uk

HORSHAM MATTERS

Offers support with emergency food, gas/electric top ups and essential furniture items, household budgeting and signposts to other support.

Tel: 0300 124 0204

Email: support@horsham-matters.org.uk

https://horsham-matters.org.uk

TURNING TIDES

Operates community hubs in Horsham, Littlehampton andWorthing to help adults who are homeless or at risk of becoming homeless.

Tel: 01903 680748

www.wchp.org.uk

UK FOODBANK NETWORK (THE TRUSSELL TRUST)

Phone to be put in touch with your nearest foodbank, or search online.

Tel: 01722 580180

Email: enquiries@trusselltrust.org

www.trusselltrust.org/get-help/find-a-foodbank

Lodge Hill Centre (near Pulborough)

Outdoor education centre, activities and conference facilities. Fully accessible lodge.

Tel: 01798 831411

www.lodgehill.org.uk

Look Sussex

Provides events and support to the families of children and young people with a visual impairment in East and West Sussex.

Tel: 07703 434119

Email: info@looksussex.org.uk

https://looksussex.org.uk

Mid Sussex Marlins

Swimming club with two groups for adults and children from age 7 with SEND. Dolphins in Burgess Hill and Starfish at Haywards Heath.

Email info@midussexmarlins.org

www.midsussexmarlins.org/disabilities

Mid Sussex Mencap

Provides support, social activities and funding to people with learning disabilities.

Tel: 01444 471431

Email: chair@midsussexmencap.org.uk

www.midsussexmencap.org.uk

Mind – Coastal West Sussex

An independent local mental health charity. Offers mental health services and support. They also offer free or low cost e-learning and courses for parent carers.

Tel: 01903 277000

Email: helppoint@westsussexmind.org

www.coastalwestsussexmind.org

Moving Barriers Club (K2, Crawley)

Sporting activities and team games for disabled children aged five to 16 and their families.

Tel: 01293 585350

Email: sportsdevelopment@crawley.gov.uk

https://crawley.gov.uk/culture/sport-and-leisure/inclusive-sport/disability-sessions

MXT Swimming School

Swimming teachers experienced in working with children with autism, muscular dystrophy, ADHD, dysphasia, dyspraxia and cerebral palsy. SEND lessons are taught in Storrington and Steyning.

Tel: 01903 202700 or 07903 731370

Email: mxtswim@gmail.com

www.mxtswimschool.com

My Care Passport (This is me)

Helps parent carers to share important information about their child with hospital staff during a visit or a stay in hospital, so they can understand their needs. You can find a blank template to fill out at:

www.sussexcommunity.nhs.uk/downloads/services/learning_dis_health/ldhft-hospital-passport.pdf

My Sister’s House

A women’s drop-in centre operating in Bognor, which covers coastal West Sussex. It offers numerous groups and activities to support women with their mental health and wellbeing, as well as support for women experiencing domestic abuse and a sexual health clinic:

Tel: 01243 697800

Email: office@mysisters.info

www.mysistershouse.info

National Autistic Society (NAS) Horsham Club

Club for five to 18 year olds with autism held at Lavinia House. Fun activities in a safe, structured, autism-friendly setting.

Tel: 01483 521743

Email: SEResourceCentres@nas.org.uk

www.autism.org.uk/what-we-do/support-in-the-community/social-groups/surrey-west-sussex-social-group

Oak Community Project, Rustington (WSCC)

Community-focused day service for adults with learning disabilities, providing assessed care within a structured programme of activities.

Tel: 01903 779739 or 07980 261928

Email: chris.hughes@westsussex.gov.uk

www.facebook.com/oakcommunityproject

Olive Tree Cottage

Food parcels available on Saturday mornings for people in need.

40 Links Avenue, Felpham, PO22 7BX

Tel: 07496 076846

www.facebook.com/friendsofolivetreecottage

Outreach 3 Way (age 16+)

Provides day services, sheltered employment and social clubs for people with learning disabilities and autism.

Tel: 0300 303 9032

Email: hello@outreach3way.org

www.dimensions-uk.org/service/south/outreach-3-way

Parents and Carers Support Organisation (PACSO) (Chichester) (SB)

Runs a number of after-school clubs, weekend activities, and holiday playschemes for children with SEND in West Sussex aged between birth and 25 years.

Tel: 01243 533353

Email: admin@pacso.org.uk

www.pacso.org.uk

Patient Advice and Liaison Service (PALS)

Information and advice service (including complaints) for NHS patients. Hospitals and NHS services are listed by NHS trust.

BRIGHTON AND SUSSEX UNIVERSITY HOSPITALS

Princess Royal Hospital, Haywards Heath

Tel: 01444 448678

Royal Alexandra Children’s Hospital, Brighton

Tel: 01273 696955

Royal Sussex County Hospital, Brighton

Tel: 01273 664511 or 01273 664973

Email: PALS@bsuh.nhs.uk

www.bsuh.nhs.uk/your-visit/help-and-support/patient-advice-and-liaison-service-palsRoyak

SURREY AND SUSSEX HEALTHCARE

NHS TRUST

East Surrey Hospital

Tel: 01737 231 958

Email: pals@sash.nhs.uk

www.surreyandsussex.nhs.uk/patients-visitors/pals

SUSSEX PARTNERSHIP NHS

FOUNDATION TRUST

Tel: 0300 304 2198

Email: pals@sussexpartnership.nhs.uk

WESTERN SUSSEX HOSPITALS

St Richard’s Hospital, Chichester

Tel: 01243 831822

Email: PALSChichester@wsht.nhs.uk

Worthing and Southlands Hospital

Tel: 01903 285032

Email: PALSWorthing@wsht.nhs.uk

www.westernsussexhospitals.nhs.uk/services/patient-advice-and-liaison-service-pals-complaints/

Pegasus card scheme (Sussex Police)

Card for people with disabilities or communication difficulties to alert emergency services that the holder needs additional help.

www.sussex.police.uk/contact/af/contact-us/us/contact-us/sspegasus-scheme/pegasus-scheme/

The Point (previously Scope West Sussex)

Independent charity, running a day centre for adults with significant physical disabilities, with a focus on leisure activities and new experiences.

Tel: 01243 775330

Email: info@scope-west-sussex.org.uk

https://thepoint-chichester.org

Rainbow Trust

Provides emotional and practical support to families of children with life-threatening or life-limiting conditions.

Tel: 01372 220111

Email: enquiries@rainbowtrust.org.uk

www.rainbowtrust.org.uk

Reaching Families

Information, training and peer support for parents and families of children and young people with SEND in West Sussex.

Tel: 01903 366360

Email: admin@reachingfamilies.org.uk

www.reachingfamilies.org.uk

Ready and Able Sports Club (Horsham)

Sports and social club for people with disabilities (aged 18+) and their families.

Tel: 07764 146339

Email: paul.taylor@horsham.gov.uk

www.horsham.gov.uk/sport-and-leisure/accessible-and-inclusive-activities/ready-and-able-disability-sports-club-for-adults

Regis Gymnastics (Bognor Regis)

Inclusive gymnastics lessons and rebound therapy. Also planning SEND sessions in future.

Tel: 07799 836341

Email: regisgymnastics@gmail.com

www.regisgymnastics.com/Classes/disability.html

Rehabilitation Engineering Service (Chailey Clinical Services)

Provides rehabilitation engineering services and Assistive Technology to children and young people with complex physical disabilities to maximise their independence and safety.

Tel: 01825 722112

Email: Sc-tr.chaileyenquiries@nhs.net

www.sussexcommunity.nhs.uk/services/chailey/res.htm

Relate

Counselling, mediation and therapy for couples and families.

www.relate.org.uk/sussex

FOR CHICHESTER, CRAWLEY, EAST GRINSTEAD AND HORSHAM

Tel: 01293 657 055 or 01243 788 935 (Chichester only)

Email: reception.crawley@relatesussex.org

FOR HAYWARDS HEATH AND WORTHING

Tel: 01273 697997

Email: reception.brighton@relate.org.uk

Riding for the Disabled Association (RDA)

Offers lessons at various centres around the county.

Tel: 01403 700260 (Janice Massey)

Email: Janice.m@btinternet.com

www.rda-southeastregion.org.uk/how-we-can-help-you/find-a-group

Samaritans

Free 24-hour helpline for people to call and talk through problems with trained volunteers.

National support line tel: 116 123 (free)

Email: jo@samaritans.org

www.samaritans.org

SEND Youth Voice

Gives young people aged 11 to 25 with SEND the chance to share their views and help to shape future services.

Tel: 07734 000401

Email: rachel.sadler@westsussex.gov.uk

www.rixwiki.org/west-sussex-mmm/home/youth-participation-1

Short Breaks for Disabled Children

Holiday clubs, after-school clubs, buddy schemes and short breaks at home or in the community. Available for children and young people up to the age of 18 who live in West Sussex and receive either the middle or high care component of DLA or the standard or enhanced rate of PIP or have equivalent needs. Go to website and search for ‘short breaks for disabled children’.

Tel: 0330 222 2562

Email: SENDCommissioningTeam@westsussex.gov.uk

www.westsussex.gov.uk

Signposts (Mid Sussex) Ltd (Burgess Hill)

Information, advice, support and activities for adults with lifelong disabilities, and their families, friends, carers and professionals, in Mid Sussex and surrounding areas.

Tel: 01444 616232

Email: info@signpostsmidsussex.org.uk

www.signpostsmidsussex.org.uk

Specialist Health Visiting Team

A service for children with additional and complex needs aged from birth to eight years and their families, based in the Child Development Teams across West Sussex.

Chichester: 01243 793639

Crawley and Horsham: 01293 600351

Haywards Heath: 01444 414100

SPIN (Single Parent Information Network)

Voluntary organisation providing information and support to Single parents in Brighton, Hove and Sussex. Also has a Facebook group.

Tel: 07948971559

Email: spin@live.co.uk

https://e-voice.org.uk/spin/

Sport Without Boundaries (formerly Southern Area Disability Sports Group)

Helps develop sporting opportunities for children with disabilities. See website for events.

Tel: 01903 890314

http://sportwithoutboundaries.co.uk

The Springboard Project (SB)

Inclusive play, recreation centre and other support for children and young people with special needs and their families. Also runs Short Breaks clubs in Horsham, Crawley and Worthing.

Tel: 01403 218888

Email: hello@springboardproject.com

www.springboardsupport.org

Stay Up Late (18+)

Charity promoting full and active social lives for people with learning disabilities aged 18+. Arranges for buddies through Gig Buddies and Sports Buddies to accompany young people to gigs, cultural and leisure activities. See Gig Buddies website for more.

Tel: 020 3920 8471

Email: info@stayuplate.org

www.gigbuddies.org.uk

Sunbeam Swimming Club (Horsham)

Swimming club for children (8+) and adults with a disability or condition of any kind, which meets at Pavilions in the Park, Horsham. Prior to attending for the first time, please email Sarah Burling (coach).

Email: sunbeamenquiries@gmail.com

www.facebook.com/SunbeamSC

Sussex Against Bullying CIC

Offers a range of services, including parental support, mentoring, youth club and holiday scheme for young people aged 8 to 18 who have been affected by bullying.

Tel: 01243 290156

Email: info@sussexab.org.uk

www.sussexab.org.uk

Sussex Association for Spina Bifida and Hydrocephalus (SASBAH)

Advice, support, social events and residential breaks for people with spina bifida and/or hydrocephalus and their families.

Tel: 01825 873045

Email: office@sasbah.org.uk

www.sasbah.org.uk

Sussex Bears Wheelchair Basketball

Non-profit club with a wheelchair league for age 14+. The club is also open to those aged ten and over who want to try wheelchair bastketball. Opportunities across venues including Brighton, Lancing and Worthing.

Tel: 07955 333633 (Ricky)

Email: ricky@sussexbears@gmail.com

www.sussex-bears.co.uk/wheelchair

Sussex Cricket Club

Holds weekly inclusive cricket sessions and holiday camps in Chichester, Horsham and Worthing.

Tel: 01273 827 100

Email: info@sussexcricket.co.uk

https://sussexcricket.co.uk

Sussex Mental Healthline

Telephone service (24 hours, seven days a week) offering support, advice, information and signposting to anyone experiencing difficulties with their own mental health, or that of a relative or friend.

Tel: 0800 0309 500

www.sussexpartnership.nhs.uk/sussex-mental-healthline

Sussex Snowdrop Trust

Support and care at home for children with life-threatening or terminal conditions.

Tel: 01243 572433

Email: office@snowdroptrust.com

www.thesussexsnowdroptrust.com

Sussex Wasps Disabled Archery Club (Brighton)

Archery club for people of all ages and abilities.

Tel: 07963 652344 (Phil Reay)

www.sussexwasps.weebly.com

The Tadpoles Swimming Club (East Grinstead)

Swimming and water therapy club for people of all ages with disabilities and additional needs.

Tel: 01342 321779 or 01342 823464

Email: thetadpoleseg@gmail.com

http://tadpoles.info

Time Aside

Sensory art workshops for the whole family, which run at community events, holiday schemes, family fun days, and special needs schools.

Tel: 07792 903236 (Sueloo Brown)

Email: sueloo@timeaside.com

www.facebook.com/timeasidesensoryart

Time4U

A range of respite services including after school clubs with school pick ups, inset days, half-term and summer holiday activity days.

Email: Time4Uactivities@gmail.com

www.time4uactivities.com

Tu Vida (was Crossroads Care) (SB)

Support for young people aged 11 to 18 years, who have medium to high needs and are socially isolated or not attending education. Available in Arun, Adur, Chichester, Horsham and Worthing.

Tel: 01903 790270

Email: westsussex@tuvida.org

www.tuvida.org/childrens-short-break

Umbrellas Parent Support Groups

Support for parents and carers of children and young people with special needs and disabilities, groups are run by Reaching Families.

Tel: 01903 366360 or 07951 794734 (Hannah)

Email: Hannah@reachingfamilies.org.uk

www.reachingfamilies.org.uk/umbrellas.html

Wadurs Swimming Pool

Swimming lessons (one-to-one if required) for children and adults with disabilities in Shoreham.

Tel: 01273 238000

www.southdownsleisure.co.uk/wadurs-swimming-pool

WBC Cares

Organisation working to increase inclusivity and diversity in boxing via safe, affordable and accessible training. Offers safer adaptive boxing for people with disabilities and specific programmes for children, youths at risk and people with physical or learning disabilities. Classes in Brighton, Horsham, Southwater and Worthing.

Tel: 07869 526299 (Lindsey)

Email: info@wbccaresuk.org

www.wbccaresuk.org

Wellspring

Provides information, services and resources to children and young people with disabilities and their families.

Tel: 07742 408868

Email: lizzie@wellspringwestsussex.org.uk

www.wellspringwestsussex.org.uk

Westgate Leisure Centre (Chichester)

Various sports and leisure activities including inclusive swimming (one to one if required), gymnastics and trampolining for children aged five and over. Swimming pool hoist available. Also runs Branching Out, an inclusive multi-sports club for young people aged five to 18 with SEND and their families.

Tel: 01243 785651

www.everyoneactive.com/centre/westgate-leisure-centre

West Sussex ADHD Support

A parent-led volunteer group, supporting individuals of all ages with ADHD in West Sussex.

CRAWLEY

Tel: 07973 873651

Email: crawley@adhdwestsussex.org

www.facebook.com/groups/CrawleyADHD

WORTHING

Tel: 07765 262524 or 07875298976

Email: worthing@adhdwestsussex.org

www.facebook.com/groups/worthingADHD

West Sussex Parent Carer Forum (WSPCF)

For parent carers of children and young people with SEND aged up to 25. Represents parent carer views to organisations and professional bodies.

Tel: 01903 726188

Email: office@wspcf.org.uk

www.wspcf.org.uk

West Sussex Young Carers

Service run by West Sussex County Council to support children who have a parent or sibling with a disability or special educational needs.

Tel: 01903 270300

www.westsussex.gov.uk/education-children-and-families/young-carers

Wheels for All (Horsham)

Inclusive cycling sessions, open to all ages and abilities. Wide range of adapted trikes and cycles. Held at The Bridge Leisure Centre, Broadbridge Heath.

Tel: 07764 146339 (Paul Taylor)

Email: paul.taylor@horsham.gov.uk

https://hdsd.org.uk/Inclusive-Activities/disabilities

Wheels for Wellbeing (Crawley)

Specialist cycle track with adapted cycles for wheelchair users and people with disabilities. Open to all ages and abilities. Held at the Cherry Lane BMX track, Crawley.

Tel: 01293 585355

Email: wheelsforwellbeing@crawley.gov.uk

www.crawley.gov.uk/wfw

Wheely Wonders (Sidlesham)

A family day of forest school, farm activities and crafts, designed for children with disabilities or special needs, their siblings, parents and carers.

Tel: 07786 368800

Email: woodlandwondersforestschool@gmail.com

www.woodlandwondersforestschool.co.uk/wheely-wonders

Whizz-Kidz Club (Crawley)

Youth group for wheelchair users aged eight to 25 years. Activities include music, dance, art, sports, beauty therapy and cooking.

Tel: 07833 772949 (Laura Clarke)

Email: l.clarke@whizz-kidz.org.uk

www.whizz-kidz.org.uk/kidz/young-peoples-services

Whoopsadaisy (Brighton)

Courses in conductive education for children aged from birth to 12 with cerebral palsy and other motor disorders, and their parents.

Tel: 01273 554178 or 07533 956149

Email: info@whoopsadaisy.org

www.whoopsadaisy.org

Windmills Opportunity Playgroup (Burgess Hill)

Inclusive playgroup for preschool children with and without additional needs.

Tel: 01444 220378

Email: admin@windmillsplaygroup.co.uk

www.windmillsplaygroup.co.uk

World’s End Recreation Ground (Burgess Hill)

Inclusive play area with wheelchair accessible swing and roundabout. Changing Places toilet on site.

Janes Lane, Burgess Hill, RH15 0QJ

www.midsussex.gov.uk/leisure-sport/playgrounds

Worth Services

Independent service supporting people affected by domestic abuse.

Tel: 0330 222 8181 or 07834 968539

www.worthservices.org

Worthing Counselling Centre

Confidential counselling service for people on a limited budget who could not otherwise afford it.

Tel: 01903 212275

Email: info@worthingcounsellingcentre.org

www.worthingcounsellingcentre.org

Worthing Lego Club

Runs monthly for children and young people with additional needs and their families at St John’s Church Hall, Worthing.

Tel: 07538 375936

www.facebook.com/worthing.lego.club

Worthing Leisure Centre (South Downs Leisure)

Inclusive holiday, weekend and after-school clubs, one-to-one support can be provided during the holiday activity sessions if required. The centre has a changing places toilet, a sensory play area and Aiming High trampolining sessions with a hoist.

Tel: 01903 905050

www.southdownsleisure.co.uk/disability-and-inclusion

Worthing Mencap

Runs a café, information centre, charity shop, and various clubs, activities and services for people with learning disabilities, their families and carers in the Worthing area.

Tel: 01903 202030

Email: buddys@worthingmencap.org

www.worthingmencap.org

Worthing Scope

See Guild Care

Worthing Town FC

Worthing Town FC runs inclusive football teams for children with SEND. For more information, please contact them on the email address below. Or go to the website and click on ‘teams’ then select ‘inclusive football.’

Email: enquiries@worthingtownfc.com

www.worthingtownfc.com

YMCA East Surrey

Runs Yippee Tots drop-in play for under fives with SEND, and youth clubs Yippee for five to 11-year olds and Yip4Youth for 12 to 18-year olds with SEND in West Sussex. Also offers Y Impact one-to-one mentoring for young people with SEND.

Tel: 01737 222859

Email: sovereign@ymcaeastsurrey.org.uk

www.ymcaeastsurrey.org.uk

Youth Emotional Support (YES) (WSCC)

Free service for 11 to 18 year olds looking for support with their mental and emotional wellbeing. Referrals can be made by a GP, CAMHS or a school nurse. You can also self-refer via your local FindItOut Centre. Referrals must be received before the person turns 18. Go to website below and click on ‘Emotional Wellbeing and Mental Health’ and then on ‘Youth Emotional Support service’.

Tel: 0330 222 6711

Email: yes@westsussex.gov.uk

www.westsussex.gov.uk/education-children-and-families/your-space/health

Your Space

Information and advice for young people aged 11 to 25. Includes information on jobs, education, bullying, health, leisure, support for SEND and much more.

www.westsussex.gov.uk/education-children-and-families/your-space

Section four: Directories

National directory

Ability Net

Helps children and adults with disabilities to use IT, computers and access the internet.

Tel: 0800 048 7642

Email: enquiries@abilitynet.org.uk

www.abilitynet.org.uk

ABLEize

Comprehensive online directory of disability and health care information, products, services and groups - run by people with disabilities.

www.ableize.com

AccessAble (formerly DisabledGo)

Accessibility information and other tips for thousands of venues across the UK and the Republic of Ireland.

Tel: 01438 842710

Email: hello@accessable.co.uk

www.accessable.co.uk

Accessible Screenings UK

Searchable online database for accessible screenings in UK cinemas, such as subtitled, audio described and autism friendly/relaxed. Includes accessibility information for cinemas.

https://accessiblescreeningsuk.co.uk

Action against Medical Accidents (AvMA)

Provides independent advice and support to people affected by medical accidents and works in partnership with healthcare bodies to improve patient safety.

Tel: 0845 123 2352

www.avma.org.uk

Action for All Speech Impaired Children (AFASIC)

Information, advice and training for parents of children with speech, language and communication needs.

Tel: 0300 666 9410

www.afasic.org.uk

Action for ME

Online information , support and resources, including advocacy, for people who have Myalgic Encephalomyelitis (ME).

Tel: 0117 927 9551

Email: questions@actionforme.org.uk

www.actionforme.org.uk

Action for Sick Children

Campaigns on all aspects of children’s healthcare.

Tel: 0161 486 6788

Email: gill@a4sc.org

www.actionforsickchildren.org

Activity Alliance

Works to make sure disabled people can lead active lives. Supports sports organisations so they can be as inclusive as possible.

Tel: 01509 227750

Via online contact form at: www.activityalliance.org.uk

Aerobility

Charity offering disabled people, without exception, the opportunity to fly an aeroplane. You can also watch “Armchair Airshows” free online.

Tel: 0303 303 1230

Email: frontdesk@aerobility.com

www.aerobility.com

Ambitious about Autism

Training and campaigning for improved opportunities for children and young people with autism. Specialist education through TreeHouse School, The Rise School and Ambitious College.

Tel: 020 8815 5444

Email: info@ambitiousaboutautism.org.uk

www.ambitiousaboutautism.org.uk

Anti-Bullying Alliance

A coalition of organisations and individuals united against bullying. Offering advice, support and training, including information on SEND, with resources for schools and signposts to support.

Email: aba@ncb.org.uk

www.anti-bullyingalliance.org.uk

Association for Real Change (ARC)

Membership organisation specifically for learning disability and autism providers, offering training, networking and consultation.

Tel: 01246 555043

Email: contact.us@arcuk.org.uk

https://arcuk.org.uk

Association for Rehabilitation of Communication and Oral Skills (ARCOS)

Provides information, advice, support, training and therapy to children and adults with communication, eating, drinking or swallowing difficulties.

Tel: 01684 576795 or 07984 451327

Email: afsil@arcos.org.uk

www.arcos.org.uk

Asthma UK

Organisation offering support and health advice to people with asthma. Helpline is manned by asthma nurses who can advise people about medications and their asthma care plan.

Tel: 0300 222 5800

Email: info@asthma.org.uk

www.asthma.org.uk

Attention Deficit Disorder Information and Support Service (ADDISS)

Information, advice and training for people living with ADHD/ADD and their carers/families.

Tel: 020 8952 2800

Email: info@addiss.co.uk

www.addiss.co.uk

Barnardo’s

Works to protect, support and nurture vulnerable children. Not all services are available in West Sussex.

Tel: 01293 610660

www.barnardos.org.uk/what-we-do/helping-families/young-carers

Beat

Information and helpline support for anyone with an eating disorder.

Youthline: 0808 801 0711

Studentline: 0808 801 0811

Helpline: 0808 801 0677

www.beateatingdisorders.org.uk

BIBIC

Assessment and developmental therapy for people aged 6 months to 25 years with brain injuries and other conditions including auditory processing difficulties.

Tel: 01458 253344

Email: sal@bibic.org.uk

https://bibic.org.uk

Birth Trauma Association

Information and support for women and families after a traumatic birth experience.

Tel: 01264 860380, email:

support@birthtraumaassociation.org.uk

www.birthtraumaassociation.org.uk

Bladder and Bowel UK

Advice and information on bladder and bowel issues, with a dedicated section for children and young people including those with SEND.

Tel: 0161 214 4591

Email: bbuk@disabledliving.co.uk

www.bbuk.org.uk

Bobath Centre

Specialist therapy centre for children with cerebral palsy and similar neurological conditions.

Tel: 020 8444 3355

Email via online contact form at: www.bobath.org.uk

Brain and Spine Foundation

Information, advice and training for people affected by brain and spine conditions.

Helpline: 0808 808 1000

Email: helpline@brainandspine.org.uk

www.brainandspine.org.uk

British Association for Counselling and Psychotherapy (BACP)

Membership organisation governing the professional standards of counsellors and psychotherapists.

Tel: 01455 883300

Email: bacp@bacp.co.uk

www.bacp.co.uk

British Deaf Association

Organisation that campaigns for equality for deaf people and offers a range of services including training in BSL (British Sign Language).

Tel: 020 7697 4140

Email: bda@bda.org.uk

https://bda.org.uk

British Dyslexia Association

Information and advice for people with dyslexia, including resources and assessments.

Tel: 0333 405 4555

Email via online contact form at: www.bdadyslexia.org.uk

The British Institute of Learning Disabilities (BILD)

Information, advice and support for people with learning disabilities and their families. Including information on apprenticeships and growing older.

www.bild.org.uk

British Pregnancy Advisory Service

Information, counselling and treatment including emergency contraception, miscarriage and pregnancy support, vasectomies and STIs.

Tel: 0345 730 4030

www.bpas.org

Brittle Bone Society

Information, advice, events and grant funding for people with brittle bone disease (osteogenesis imperfecta).

Tel: 01382 204446

Email: bbs@brittlebone.org

https://brittlebone.org

Brook

Information, advice and support on health and relationships for young people aged under 25, including sexual health, contraception and pregnancy.

www.brook.org.uk

Calvert Trust

Charity offering accessible outdoor adventure holidays for children and adults with disabilities. Centres in Exmoor, the Lake District and Northumbria.

www.calvert-trust.org.uk

Care Quality Commission

Independent agency regulating health and social care in England.

Tel: 0300 061 6161

Email: enquiries@cqc.org.uk

www.cqc.org.uk

Carers Trust

Information, advice, support and a network of local services for carers.

Tel : 0300 772 9600

Email: info@carers.org

https://carers.org

Carers UK

Advice and support for carers, including a helpline, fact sheets, online forum and information about Carer’s Allowance.

Tel: 0808 808 7777

Email: advice@carersuk.org

www.carersuk.org

CEA Card

A scheme that allows a disabled person of eight years or over to take a carer free of charge to films at participating cinemas. There is a small charge for the card, which is valid for 12 months.

Tel: 01244 526016

Email: info@ceacard.co.uk

www.ceacard.co.uk

Cerebra

Information and advice for families of children with brain conditions, including autism and learning disabilities. Also runs services for sleep issues, legal entitlements, health and money matters, and a lending library offering books and sensory equipment.

Tel: 0800 328 1159

Email: enquiries@cerebra.org.uk

www.cerebra.org.uk

Cerebral Palsy Sport

Supports people with cerebral palsy to maximise their sporting potential via adapted sports such as frame football, swimming, athletics and touch golf.

Tel: 0115 925 7027

Email: info@cpsport.org

www.cpsport.org

Challenging Behaviour Foundation

Information, support, advice and workshop for families of people with severe learning disabilities and challenging behaviour.

Tel: 0300 666 0126

Email: support@thecbf.org.uk

www.challengingbehaviour.org.uk

Changing Faces

Support and resources for people who have a visible difference.

Tel: 0300 012 0275

Email: info@changingfaces.org.uk

www.changingfaces.org.uk

Child Bereavement UK

Helps children and families to rebuild their lives when a child is bereaved or dies.

Tel: 0800 028 8840

Email: support@childbereavementuk.org

www.childbereavementuk.org

Child Brain Injury Trust (CBIT)

Family support, counselling, information, advice and training, for children with acquired brain injuries.

Tel: 0303 303 2248

Email: info@cbituk.org

https://childbraininjurytrust.org.uk

Child Death Helpline

Freephone service staffed by trained volunteers for anyone affected by the death of a child, no matter how long ago.

Tel: 0800 282 986

Email via the online contact form at: www.childdeathhelpline.org.uk

Childline

Free, confidential, 24-hour support to help anyone under 19 with any issue. One-to-one counsellor chat available on website.

Tel: 0800 1111

www.childline.org.uk

Child Maintenance Service (CMS)

Government agency that seeks to ensure parents who live apart from their children contribute financially to their upkeep.

Tel: 0800 953 0191

www.gov.uk/making-child-maintenance-arrangement

Children’s Heart Association

Supports families of children with heart conditions.

Tel: 01706 221988

Email: information@heartchild.info

https://heartchild.info

Children’s Heart Federation

Information, advice and small grants to families of children with heart conditions.

Tel: 0300 561 0065

Email: info@chfed.org.uk

www.chfed.org.uk

The Choice Forum

An online community for people with learning disabilities and their families where all sorts of topics can be discussed. There is an easy-read guide to staying safe on the forum.

www.choiceforum.org

Cleft Lip and Palate Association (CLAPA)

For families of children with a cleft lip and/or palate, includes online feeding support, information, Facebook group and weekends for nine to 15 year olds.

Tel: 020 7833 4883

Email: info@clapa.com

www.clapa.com

The Compassionate Friends

A parent-led group that offers support and care to anyone who has suffered the death of a child of any age.

Tel: 0345 123 2304

Email: helpline@tcf.org.uk

www.tcf.org.uk

Computers for the Disabled

Information, advice and the provision of recycled computers to disabled people and organisations.

Tel: 01268 284834 or 07949 530509

Email: bigpaulh@blueyonder.co.uk

www.cftd.co.uk

Contact

National charity for families with disabled children. Provides information, advice and support, brings families together so they can support each other, campaigns to improve families’ circumstances and for their right to be included and equal in society. See also Fledglings online shop.

Tel: 0808 808 3555

Email: helpline@contact.org.uk

www.facebook.com/contactfamilies

https://contact.org.uk

Coram Children’s Legal Centre and Child Law Advice

Provides legal advice, information and representation for children and young people and their families.

Family/child law, tel: 0300 330 5480

Education law, tel: 0300 330 5485

General information: www.childrenslegalcentre.com

Legal advice: www.childlawadvice.org.uk

Council for Disabled Children

Umbrella organisation that campaigns on behalf of the disabled children’s sector. Online resource library.

Email: cdc@ncb.org.uk

https://councilfordisabledchildren.org.uk

Cry-Sis

Information and advice to families with babies who cry excessively or have sleep problems.

Tel: 0845 122 8669

Email: info@cry-sis.org.uk

www.cry-sis.org.uk

Cystic Fibrosis Trust

Information and advice, care and support, grants, research and campaigning on behalf of people with cystic fibrosis.

Tel: 0300 373 1000 or 020 3795 2184

Email: helpline@cysticfibrosis.org.uk

www.cysticfibrosis.org.uk

Diabetes UK

Information, advice and support for people living with diabetes.

Tel: 0345 123 2399

Email: helpline@diabetes.org.uk

www.diabetes.org.uk

Disability Equipment Service

National website for new and used disability equipment.

Tel/text: 07845 041678

www.disabilityequipmentservice.co.uk

Disability Law Service

Legal advice and representation for disabled people and their carers.

Tel: 020 7791 9800

Email: advice@dls.org.uk

https://dls.org.uk

Disability, Pregnancy and Parenthood

Practical information and peer support online for disabled parents.

Email: info@disabledparent.org.uk

www.disabledparent.org.uk

Disability Rights UK

Promotes equal participation for all. Providing information, advice, resources, helplines and campaigns on independent living and careers.

Tel: 0330 995 0400

Email: enquiries@disabilityrightsuk.org

www.disabilityrightsuk.org

Down’s Heart Group

Offers support and information relating to heart conditions associated with Down syndrome.

Tel: 0300 102 1644

Email: info@dhg.org.uk

https://dhg.org.uk

Down’s Syndrome Association

Information, advice, and support for people with Down syndrome and their families.

Tel: 0333 121 2300

Email: info@downs-syndrome.org.uk

www.downs-syndrome.org.uk

Dwarf Sports Association UK

Making regular sporting opportunity accessible and enjoyable to anyone and everyone of restricted growth.

Tel: 01246 296485 or 07889 922 736

www.dsauk.org

Dyspraxia Foundation

Information, advice and support for people with dyspraxia, also known as Development Coordination Disorder (DCD).

Tel: 01462 454986

Email: info@dyspraxiafoundation.org.uk

https://dyspraxiafoundation.org.uk

Epilepsy Action

Information, advice, training, support and campaigning on behalf of people with epilepsy.

Tel: 0808 800 5050

Text message: 07479 638071

Email via online contact form at: www.epilepsy.org.uk

Equality Advisory and Support Service (EASS)

Advises and assists individuals on issues relating to equality and human rights, such as disability rights and discrimination. Has online resources such as template letters.

Tel: 0808 800 0082

Textphone: 0808 800 0084

www.equalityadvisoryservice.com

Equality and Human Rights Commission

Challenges discrimination and protects and promotes human rights. NB: For advice and support contact the EASS, above.

www.equalityhumanrights.com

ERIC – The Children’s Bowel and Bladder Charity

Information on bowel and bladder health for children and teenagers. Includes a helpline service for parents, downloadable resources and an online shop selling continence products.

Tel: 0808 169 9949

Email via online contact form at: www.eric.org.uk

Euan’s Guide

Online guide to venues with good disabled access throughout the UK. Reviews of venues are written by disabled people and their families.

Tel: 0131 510 5106

Email: hello@euansguide.com

www.euansguide.com

Evelina London Children’s Hospital

Part of Guy’s and St Thomas’ NHS Trust, this is a specialist hospital offering treatment to children and young people from across the South East, referrals are usually made from local medical services.

Tel: 020 7188 7188

www.evelinalondon.nhs.uk

Everyone Can

Information, advice and assessment to enable disabled people to speak, live independently, control their environment and have fun through gaming. They run a fully accessible gaming centre in Manchester.

Tel: 0808 800 0009

www.everyonecan.org.uk

Family Fund

Charity offering grants and digital support services to families of children with a disability or a serious or life-limiting illness.

Tel: 01904 550055

www.familyfund.org.uk

Family Lives

Information, advice and support to families on any aspect of family life or parenting.

Tel: 0808 800 2222

www.familylives.org.uk

Family Rights Group

Information and advice, plus support to hold Family Group conferences, for parents whose children are in need, at risk or are in the care system and for members of the wider family who are raising children unable to remain at home.

Tel: 0808 801 0366

www.frg.org.uk

Fledglings

Sells clothing, toys and sensory products that improve the lives of disabled children and their families. The online shop is run by Contact.

Tel: 020 3319 9772

Email: fledglings@contact.org.uk

https://fledglings.org.uk

Foundation for People with Learning Disabilities

Wide range of services providing information, forums, training, and campaigning on behalf of people with learning disabilities.

www.learningdisabilities.org.uk

FPA

Advice, resources and more on sexual health, relationships and growing up with books and numerous resources geared towards children and young people and easy read guides for people with learning disabilities.

www.fpa.org.uk/contact-us/

Fragile X Society

Offers information, advice and peer support to families of children with Fragile X Syndrome. Has a newsletter, Facebook page, helpline service and online resources.

Tel: 01371 875100

Email: info@fragilex.org.uk

www.fragilex.org.uk

FRANK

Confidential advice about drugs, with live chat available on their website. You can also send an email by filling in their online form.

Tel: 0300 123 6600

Text: 82111

www.talktofrank.com

Gene People (formerly Genetic Disorders UK)

Information, advice and a helpline led by genetic counsellors, for families affected by genetic conditions.

Tel: 0800 987 8987

Email: helpline@genepeople.org.uk

https://genepeople.org.uk

Genetic Alliance UK

An alliance of over 200 patient organisations, this charity works to improve the lives of individuals and families affected by rare, genetic and undiagnosed conditions. Both Rare Disease UK and SWAN UK are part of this charity.

Tel: 020 7831 0883

Email: contactus@geneticalliance.org.uk

www.geneticalliance.org.uk

Gingerbread

Organisation supporting single parents. Offers online advice and information as well as a forum and local groups and meet ups.

Tel: 0808 802 0925

www.gingerbread.org.uk

Girlguiding

National umbrella organisation for girl guides throughout the UK. Provides special funding and support to girls with additional needs. Sections include Rainbows (five to seven years), Brownies (seven to ten) and Guides (ten to 14).

Tel: 020 7834 6242

www.girlguiding.org.uk/information-for-parents/how-guiding-benefits-girls/support-for-additional-needs

Go Kids Go!

Provides wheelchair skills training to children and young people across the UK.

Tel: 01482 887163

Email: roy@go-kids-go.org.uk

www.go-kids-go.org.uk

Great Britain Wheelchair Rugby

National governing body, that promotes and supports clubs through the country. Offers a junior programme for ages 8 to 17. Search for clubs via their website.

Tel: 0208 831 7645

Email: info@gbwr.org.uk

https://gbwr.org.uk

Great Ormond Street Hospital (GOSH)

A leading specialist children’s hospital based in London. Children and young people are mostly referred to GOSH by their local paediatricians.

Tel: 020 7405 9200

www.gosh.nhs.uk

Guide Dogs

Guide dogs and other specialised services for children and young people with visual impairments, including information and advice.

Tel: 0800 781 1444

Email: children@guidedogs.org.uk

www.guidedogs.org.uk

Headway

Support, information and services for people affected by brain injuries, and their families and carers.

Tel: 0808 800 2244

Email: helpline@headway.org.uk

www.headway.org.uk

Heartline

Supports children with heart disorders and their families. Online forum, handbook for parents, breaks for children and families and provides free wetsuits for swimming.

Email: intouch@heartline.org.uk

www.heartline.org.uk

HemiHelp (now part of Contact)

Information, support and advice for families of children with hemiplegia. Go to Contact’s website and search for ‘hemiplegia support.’

https://contact.org.uk

Henry Spink Foundation

Information and resources on a wide range of conventional and complementary therapies available for SEND.

www.henryspink.org

Hidden Disabilities: Sunflower Lanyard Scheme

A sunflower design lanyard for people with hidden disabilities such as ADHD, autism, dementia and sensory impairments, which can alert staff that wearers may need additional assistance.

https://hiddendisabilitiesstore.com

I CAN

Information services providing help and advice to parents about speech, language and communication as well as training for practitioners.

Tel: 020 7843 2544

Email: enquiries@ican.org.uk

www.ican.org.uk

Information, Advice and Support Services (IAS Services)

Umbrella organisation representing and supporting local SEND information advice and support services.

Email: iassn@ncb.org.uk

https://councilfordisabledchildren.org.uk/information-advice-and-support-services-network

https://cyp.iassnetwork.org.uk (under 25s)

Independent Provider of Special Education Advice (IPSEA)

Information, resources and legal advice on education issues and appeals for children and young people with SEND. Also runs training courses for parents and professionals around SEND law. You can book a call back from the advice line or tribunal line on the website.

www.ipsea.org.uk

Kidney Care UK

Information, advice, support and grants for people with kidney disease.

Tel: 01420 541424

Email: info@kidneycareuk.org

www.kidneycareuk.org

Kinship (formerly Grandparents Plus)

Support and advice for kinship carers - grandparents and other relatives or family friends raising children who aren’t able to live with their parents.

Tel: 0300 123 7015

Email: advice@kinship.org.uk

https://kinship.org.uk/

Letterbox Library

Specialises in multicultural, inclusive books that celebrate diversity. Has a selection of books featuring children with SEND.

Tel: 020 8534 7502

Email: info@letterboxlibrary.com

www.letterboxlibrary.com

Listening Books

A charity that supplies an audiobook service for children and adults who find it difficult to read due to illness or disabilities.

Tel: 020 7407 9417

Email: info@listening-books.org.uk

www.listening-books.org.uk

Little Blue Cup

Volunteers post searches to help families of disabled children to replace discontinued cups, toys and other small essentials that they cannot be without.

Email: team@littlebluecup.org

https://littlebluecup.org

www.facebook.com/LittleBlueCup

Little People UK

Information, advice and support for those with dwarfism and their families, along with events and campaigning.

Email: admin@littlepeopleuk.org

or via the online contact form: https://littlepeopleuk.org

Living Made Easy (formerly Disabled Living Foundation)

Provides information and advice, including a database of recommended equipment for independent living.

Tel: 0300 999 0004

Email: info@dlf.org.uk

https://livingmadeeasy.org.uk

Local Government Ombudsman

Investigates complaints about local authorities and other organisations providing public services.

Tel: 0300 061 0614

Email via online complaint form at: www.lgo.org.uk

The Makaton Charity

Resources, information and training workshops on the Makaton communication system for families and carers.

Tel: 01276 606760

Email: help@makaton.org

www.makaton.org

Mencap

Wide ranging services for people with learning disabilities and their families and carers, including family support, wills and trusts, and benefits advice.

Tel: 0808 808 1111

Email: helpline@mencap.org.uk

www.mencap.org.uk

MERU

Designs and makes custom-built equipment for people with disabilities. Also offer a switch-adapting service for interactive toys and a loan scheme for their Bugzi, a specialist power wheelchair for under fives.

Tel: 01372 725203

Email: info@meru.org.uk

Via online contact form at: https://meru.org.uk

Metabolic Support UK

Support, information and services for people with inherited metabolic disorders and their families.

Tel: 0845 241 2173

Email via online contact form at:  www.metabolicsupportuk.org

Mind

Provides information, advice and support to empower people experiencing mental health issues.

Tel: 0300 123 3393

Email: info@mind.org.uk

www.mind.org.uk

The Mix

Free, confidential support and counselling for under 25s. Contact by live online messaging, by email via a form, or by phone or text as below:

Tel (helpline): 0808 808 4994

Crisis Messenger: text THEMIX to 85258

www.themix.org.uk

Motability

National scheme enabling people to exchange the Higher Rate Mobility component of DLA or the Enhanced Rate of Mobility component of PIP for a car, powered wheelchair, or scooter.

Tel: 0300 456 4566

www.motability.co.uk

Muscular Dystrophy UK

Charity providing services and resources to people with muscle wasting conditions, including muscular dystrophy.

Tel: 0800 652 6352

Email: info@musculardystrophyuk.org

www.musculardystrophyuk.org

National Autistic Society (NAS)

Offers information, resources and support to people with autism and their families. Runs a number of specialist helplines as well as specialist schools, day centres and local groups. Has volunteer-led branches around the UK.

Education rights: 0808 800 4102

Education tribunals: 0808 196 2010

School exclusions: 0808 800 4002

Transition to adulthood: 0808 800 0027

Email: nas@nas.org.uk

www.autism.org.uk

National Children’s Bureau (NCB)

Campaigns to enable children and young people to fulfil their right to grow up safe, secure and supported so they can achieve their potential.

www.ncb.org.uk

National Deaf Children’s Society (NDCS)

Supports children and young people with hearing impairments and their families. Has online resources, a helpline, forum and dedicated website for children and young people aged eight to 18.

Tel: 0808 800 8880

Text (SMS) 0786 00 22 888

Email: helpline@ndcs.org.uk

www.ndcs.org.uk

National Eczema Society

Provides independent and practical advice about treating and managing eczema. Has a helpline, fact sheets and runs local support groups.

Tel: 0800 448 0818

Email: helpline@eczema.org

www.eczema.org

National Trust

The Essential Companion card allows free entry to National Trust places for up to two carers when accompanying a paying guest or member.

Tel: 0344 800 1895

Email: enquiries@nationaltrust.org.uk

www.nationaltrust.org.uk/features/access-for-everyone

Newlife, the Charity for Disabled Children

Equipment providers for children with disabilities and life-limiting conditions. Also runs a helpline staffed by experienced nurses who can offer advice and support.

Tel: 0800 902 0095

Email: nurse@newlifecharity.co.uk

https://newlifecharity.co.uk

Papyrus

If you are having thoughts of suicide or are concerned for a young person who might be, you can contact HOPELINEUK for confidential support and practical advice.

Tel: 0800 068 4141

Text: 07860 039967

Email: pat@papyrus-uk.org

https://papyrus-uk.org

Parliamentary and Health Service Ombudsman

Makes final decisions on complaints that have not been resolved by NHS England, UK government departments and other public organisations.

Helpline tel: 0345 015 4033

www.ombudsman.org.uk

Patients Association

Offers confidential information, advice and support about the health and social care system.

Tel: 0800 345 7115

www.patients-association.org.uk

Phab

Recreational activities, specially equipped short breaks and holidays and clubs for children and adults with and without disabilities.

Tel: 020 8667 9443

Email: info@phab.org.uk

www.phab.org.uk

PINNT

Information, advice and support groups for patients on Parenteral (intravenous) and Enteral (nasogastric, gastrostomy and jejunostomy) feeds.

Tel: 020 3004 6193

Email: comms@pinnt.com

https://pinnt.com

Rainbow Trust

Support in hospital and at home for families who have a child aged from birth to 18 years with a life-threatening or life-limiting illness. Also offers bereavement support.

Tel: 01372 363438

Email: enquiries@rainbowtrust.org.uk

https://rainbowtrust.org.uk

Rare Disease UK

A campaign run by Genetic Alliance UK, they aim to ensure all patients and families living with rare conditions have access to high quality services, treatment and support. (NB: staff are not medically trained and cannot provide advice on specific medical conditions/diagnosis.)

Tel: 020 7831 0883

Email: info@raredisease.org.uk

www.raredisease.org.uk

Reach

Membership-based organisation, providing information and support for children with upper limb differences.

Tel: 0845 130 6225 or 020 3478 0100

Email: reach@reach.org.uk

https://reach.org.uk

Remap

Tailor-made special equipment for disabled people, designed and built by expert volunteers.

Tel: 01732 760209

Email: data@remap.org.uk

www.remap.org.uk

Rett UK

Helpline, resources, local support groups and clinics at major hospitals for children and adults with Rett Syndrome.

Helpline tel: 01582 798911

Email: support@rettuk.org

www.rettuk.org

Riding for the Disabled

Umbrella organisation representing local groups that provide riding, carriage driving and more. Welcomes people of all ages with physical or learning disabilities and autism.

Tel: 01926 492915

Email: info@rda.org.uk

www.rda.org.uk

RNIB Newsagent (formerly National Talking Newspapers)

An extensive range of popular newspapers and magazines in a range of formats for visually impaired people.

Tel: 0303 123 9999

Email: helpline@rnib.org.uk

www.rnib.org.uk/newsagent

Royal Brompton Hospital

London hospital that has a leading paediatric department for children and young people with respiratory conditions, and congenital or acquired heart disease.

Tel: 020 7352 8121

www.rbht.nhs.uk/our-services/paediatrics

Royal National Institute of Blind People (RNIB)

Wide range of services including: information and advice; training and resources; research; regional support; newsagent; talking books; and campaigning on behalf of people with sight loss.

Tel: 0303 123 9999

Email: helpline@rnib.org.uk

www.rnib.org.uk

Royal Society for Blind Children (RSBC)

Information, advice, activities and support for blind and partially sighted children and young people and their families. Also runs a specialist further education college.

Tel: 020 3198 0225

Email: connections@rsbc.org.uk

www.rsbc.org.uk

SANDS

Charity supporting people affected by the death of a baby before, during or shortly after birth. Offers online resources, a helpline, bereavement support, online forum and has a network of support groups.

Tel: 0808 164 3332

Email: helpline@sands.org.uk

www.sands.org.uk

SANE

Charity offering support and care to people with mental health problems and their families or carers. Has a helpline and email service, an online forum and resources.

Helpline: 0300 304 7000

Email: support@sane.org.uk

www.sane.org.uk

Scope

Charity for people with disabilities and their families and carers. Offers a helpline, information and advice and much more.

Tel: 0808 800 3333

Email: helpline@scope.org.uk

www.scope.org.uk

Scouts

Umbrella organisation representing the Scouting movement in the UK. Sections include Squirrels (four to five years), Beavers (six to eight years), Cubs (eight to ten and a half), Scouts (ten and a half to 14), Explorers (14 to 18) and Network (18 to 25 years).

Tel: 0345 300 1818

Email: info.centre@scouts.org.uk

www.scouts.org.uk

Sense

Supports people with complex disabilities, including those who are deafblind. Offers information and advice, specialist children’s services, summer holidays and short breaks.

Tel: 0300 330 9256

Email: info@sense.org.uk

www.sense.org.uk

Shine

Support and online resources from before birth for people who have spina bifida and/or hydrocephalus and their families/carers.

Tel: 01733 555988

Email: info@shinecharity.org.uk

www.shinecharity.org.uk

Shout

24/7 text service for anyone who is struggling to cope and needs immediate support.

Text SHOUT to 85258

www.giveusashout.org

Sibs

Charity for the siblings of disabled people. Provides direct support through Young Sibs (seven to 17 years) and has a network of adult sibling support groups. Contact via online form.

www.sibs.org.uk

www.youngsibs.org.uk

Sickle Cell Society

Supports people affected by sickle cell disease. Website has a range of resources, a blog, newsletters and a dedicated area for children.

Tel: 020 8961 7795

Email: info@sicklecellsociety.org

www.sicklecellsociety.org

Signalong

Information, advice, training and research into the development of the Signalong system of communication.

Tel: 0330 120 0770

Email: admin@signalong.org.uk

www.signalong.org.uk

Singing Hands

Online Makaton and baby signing workshops for families and professionals and an online shop selling Makaton signed DVDs.

Tel: 020 8288 1706

Email: info@singinghands.co.uk

www.singinghands.co.uk

SKIGGLE

Network of people willing to give disability-related items to others in times of need. Members can also buy, sell or donate disability aids and equipment via their marketplace.

Email: info@skiggle.co.uk

https://skiggle.co.uk

www.facebook.com/SkiggleUK

Southampton Children’s Hospital

Major centre for specialist paediatric services.

Tel: 023 8077 7222

Email: childrenshospital@uhs.nhs.uk

www.uhs.nhs.uk/Ourhospitals/SCH/SouthamptonChildrensHospital.aspx

Special Educational Needs Transport Advocacy Service (SENTAS)

Information, advice and advocacy to parents and young people concerning issues with SEND home to school/college transport.

Tel: 07986 768085

Email: info@sentas.co.uk

https://sentas.co.uk

Special Needs Jungle

Parent-led information and resources regarding SEND, with articles, latest research, legal advice and a resource hub.

www.specialneedsjungle.com

Steps

Supports people who have childhood lower limb conditions such as talipes (club foot) and Perthes disease.

Tel: 01925 750271

Email: info@steps-charity.org.uk

www.steps-charity.org.uk

St George’s Hospital

London hospital offering specialist children’s services.

Tel: 020 8672 1255

www.stgeorges.nhs.uk/service/childrens-services-2

Syndromes Without a Name (SWAN UK)

Dedicated support network for families of children and young adults with undiagnosed genetic conditions. Part of Genetic Alliance UK.

Tel: 020 7831 0883

Email: info@undiagnosed.org.uk

www.undiagnosed.org.uk

Talking Books

Run by the RNIB, this free service for people with sightloss provides talking books in a variety of formats, and books in braille and giant print.

Tel: 0303 123 9999

www.rnib.org.uk/books

Thumbs Up World

Booklets and activity packs to support children with learning and help them express themselves.

Tel: 07713 754741

Email: thumbsupworld2016@gmail.com

https://thumbsupworlduk.org

Together for Short Lives

Charity for children and young people with life-shortening or life-threatening health conditions.

Tel: 0808 808 8100

www.togetherforshortlives.org.uk

Tourettes Action

Supports people with Tourette Syndrome and their families. Offers information and support, has a help desk, befriender network and support groups.

Tel: 0300 777 8427

Live chat via the website

www.tourettes-action.org.uk

Unique

Information for families and individuals affected by rare chromosome disorders.

Tel: 01883 723356

Email: info@rarechromo.org

www.rarechromo.org

Versus Arthritis

Information, training, networking and campaigning on behalf of people with arthritis.

Tel: 0800 5200 520

Email: helpline@versusarthritis.org

www.versusarthritis.org

Walks with Wheelchairs

Website enables users to search for accessible routes that have been tested by users. You can refine your search by region, route distance, terrain and gradient.

www.walkswithwheelchairs.com

What? Why? Children in Hospital

Information and videos of common medical procedures to help parents prepare children and young people for hospital appointments.

www.whatwhychildreninhospital.org.uk

WheelPower

Offers opportunities for disabled people to play wheelchair sports to help them lead healthy, active lives.

Tel: 01296 395995

Email: info@wheelpower.org.uk

www.wheelpower.org.uk

Whizz-Kidz

Provides mobility equipment, skills training and opportunities for disabled children and young people to meet and socialise.

Tel: 0800 151 3350

Email: kidzservices@whizz-kidz.org.uk

www.whizz-kidz.org.uk

Who’s In Charge?

A nine-week programme for parents who are experiencing violence or abuse from their children.

Tel: 07966 592632

Email: cathy@whosincharge.co.uk

https://whosincharge.co.uk

Winston’s Wish

National charity providing information, advice and support to bereaved children and their families.

Tel: 0808 802 0021

Email: ask@winstonswish.org

www.winstonswish.org

Working Families

Advice for working parents and carers on topics such as employment rights, in-work benefits, flexible working options. Includes a separate section for parents of disabled children.

Tel: 0300 012 0312

Email: advice@workingfamilies.org.uk

www.workingfamilies.org.uk

Young Epilepsy

Supports children and young people with epilepsy and associated conditions, with advice on diagnosis, treatment and living with epilepsy.

Tel: 01342 831342

Email: info@youngepilepsy.org.uk

www.youngepilepsy.org.uk

Young Minds

Supports the wellbeing and mental health of children and young people, with resources on a range of mental health conditions for young people and parents.

Young people, text: YM to 85258

Parents’ helpline tel: 0808 802 5544

https://youngminds.org.uk

Section four: Directories

Education directory

For schools and other settings, please see ‘Education Settings’.

Educational organisations

ACE Education Advice

Provides free, confidential information, advice and support to parents across a range of issues including special educational needs.

Tel: 0300 011 5142 (advice line)

Email: enquiries@ace-ed.org.uk

www.ace-ed.org.uk

Alliance for Inclusive Education (ALLFIE)

National network of disabled people, parents and teachers campaigning for inclusive education.

Tel: 020 7737 6030

Email: info@allfie.org.uk

www.allfie.org.uk

Autism and Social Communication Team (WSCC)

A team of specialists with expertise in autism who aim to promote the educational, social and emotional development of children/young people; working with their parents and educational settings. Referrals should be made via schools.

Tel: 0330 222 8525

Email: helen.cottell@westsussex.gov.uk

https://westsussex.local-offer.org/services/114

Centre for Studies on Inclusive Education (CSIE)

Lobbying, campaigning, research and training for inclusive education.

Tel: 0117 353 3150

Email: admin@csie.org.uk

www.csie.org.uk

ClearVision

Postal lending library of mainstream children’s books with braille and printed text, and tactile books.

Tel: 020 8789 9575

Email: info@clearvisionproject.org

www.clearvisionproject.org

Down Syndrome Education International

Information, advice and research to improve education and outcomes for young people with Down syndrome.

Tel: 0330 043 0025

Email: hello@dseinternational.org

www.dseinternational.org/en-gb

Early Years Alliance

Information, advice, training and support for parents and professionals to help families access high quality early learning opportunities.

Tel: 020 7697 2595

Email: info@eyalliance.co.uk

www.eyalliance.co.uk

Educational Psychology Service (WSCC)

Works with children, young people, parents and schools using psychology to improve learning and development. It provides advice to the Local Authority (LA) to support assessments of children’s SEND. Tel: 01903 839308

Email: cate.mullen@westsussex.gov.uk

https://schools.westsussex.gov.uk/Services/3282

Ethnic Minority and Traveller Achievement Service

Works with schools and families to raise the attainments of children from black, Asian, Roma, Traveller and other ethnic minorities.

BLACK, ASIAN AND ETHNIC MINORITY SERVICE

Tel: 0330 222 2111

Email: emat@westsussex.gov.uk

TRAVELLER SERVICE

Tel: 0330 222 2155

Email: tes@westsussex.gov.uk

https://schools.westsussex.gov.uk/Services/3381

First-tier Tribunal (Special Educational Needs and Disability)

Tribunal that hears appeals by parents against decisions made by their local education authority concerning their child’s education, also able to make recommendations regarding health and social care.

Tel: 01325 289350

Email: sendistqueries@hmcts.gsi.gov.uk

www.gov.uk/courts-tribunals/first-tier-tribunal-special-educational-needs-and-disability

Global Mediation

If you disagree with the Local Authority over EHC assessment, the provision of or content of an EHC Plan, you have the right to go to mediation, or to appeal to the First-tier Tribunal. In order to register an appeal to the tribunal, you must first contact an independent mediation adviser and obtain a certificate to prove that you have done so.

Tel: 0800 064 4488

Email: info@globalmediation.co.uk

www.globalmediation.co.uk

Independent Parental Special Education Advice (IPSEA)

Independent advice on education matters for families of children with SEND. Also provides training on the SEND legal framework to help parents and professionals, an advice service and a tribunal advice service. Book a call back if needed on their website.

www.ipsea.org.uk

Learning and Behaviour Advisory Team (LBAT) (WSCC)

Supports young people up to the age of 16, their families and schools where learning and/or behaviour difficulties are affecting the young person’s progress in school.

Email: helen.cottell@westsussex.gov.uk

https://westsussex.local-offer.org/services/229

Listening Books

Postal and internet-based library service providing audio books for people who find it difficult or impossible to read owing to illness, learning difficulties or disabilities.

Tel: 020 7407 9417

Email: info@listening-books.org.uk

www.listening-books.org.uk

National Association for Special Educational Needs (NASEN)

Promotes the education, training, and development of all those with special educational and additional learning support needs.

Tel: 01827 311500

Email: welcome@nasen.org.uk

www.nasen.org.uk

National Institute of Conductive Education (NICE)

Workshops, training and outreach services on principles and methods of conductive education for people with movement disorders such as global development delay, dyspraxia, cerebral palsy and acquired brain injury.

Tel: 0121 449 1569

Email: foundation@conductive-education.org.uk

www.conductive-education.org.uk

National Portage Association (NPA)

Portage is a home visiting educational service for preschool children with SEND and their families. The NPA is the umbrella organisation for services, practitioners and parents. See essential directory for the West Sussex portage service.

Tel: 0121 244 1807

Email: info@portage.org.uk

www.portage.org.uk

Network 81

Information, advice, training and befriending to parents on issues around special educational needs.

Tel: 0845 077 4055

Email: advice@network81.org.uk

www.network81.org.uk

Office for Standards in Education, Children’s Services and Skills) (Ofsted)

Government body that regulates and inspects schools and children’s services.

Tel: 0300 123 1231

Email: enquiries@ofsted.gov.uk

www.gov.uk/government/organisations/ofsted

Pupil Entitlement

Works with schools and families to ensure high levels of school attendance. Also offers advice and support to parents who home-educate.

Tel: 0330 222 8200

https://schools.westsussex.gov.uk/Services/3328

Sensory Support Team

Provision of services to children and young people aged 0 to 19 years who have hearing, visual or multi-sensory needs.

Tel: 01903 270430

Email: sensory.support@westsussex.gov.uk

www.westsussex.gov.uk/education-children-and-families/special-educational-needs-and-disability-send

EDUCATION SETTINGS

Please note: some special schools and some special support centres in mainstream schools have provision through to 18 or 19 years. They are listed in this directory and marked #. Mainstream schools with sixth forms, stand-alone sixth form settings and higher education settings are listed in the Further Education Directory.

NURSERY SCHOOLS AND CHILDCARE

Information on childcare options in West Sussex, including nurseries, child minders and nanny agencies can be found at:

https://familyinfoservice.westsussex.gov.uk/Synergy/PublicEnquiry

Kamelia Kids

Inclusive day nursery for children of all abilities aged from 0 to 6 years.

Tel: 01903 504077

www.kameliakids.org.uk

Bognor Regis Nursery School (Special Support Centre)

Special Support Centre for children with significant speech and language needs and/or other special educational needs.

Location: Bognor Regis

Tel: 01243 642925

Email: office@brns.org

www.brns.org

Boundstone Nursery School (Speech and Language Unit)

Special Support Centre for young children with significant speech and language difficulties.

Location: Lancing

Tel: 01903 276860

Email: office@boundstonenursery.co.uk

www.boundstone-lancingcfc.co.uk

Dame Vera Lynn Children’s Charity

Early intervention based on the principles of conductive education, for families of under-fives with cerebral palsy and other motor learning impairments.

Tel: 01444 473274

Email: info@dvlcc.org.uk

https://dvlcc.org.uk

MAINSTREAM SCHOOLS

You can find a complete list of all West Sussex schools and colleges at:

www.westsussex.gov.uk/education-children-and-families/schools-and-colleges/find-a-school-academy-or-college

SPECIAL SUPPORT CENTRES IN MAINSTREAM PRIMARY SCHOOLS

Barnham Primary School (Special Support Centre)

Special school support facility for children who have physical disabilities and/or speech and language needs.

Location: Barnham

Tel: 01243 552197

Email: office@barnhamprimaryschool.co.uk

www.barnhamprimaryschool.co.uk

Blackthorns Community Primary Academy (Special Support Centre)

Blackthorns has a Special Support Centre for children with Education Health and Care Plans for specific learning difficulties, additional needs and speech and language difficulties.

Location: Lindfield

Tel: 01444 454866

Email:  office@blackthornsprimaryacademy.org.uk

www.blackthornsprimaryacademy.org.uk

Desmond Anderson Primary Academy (Special Support Centre)

Special Support Centre for children with autism spectrum conditions or social and communication needs.

Location: Crawley

Tel: 01293 525596

Email: office@desmondandersonprimaryacademy.org.uk

https://desmondandersonprimaryacademy.org.uk

Durrington Infant and Junior Federated Schools (Social Communication Unit)

Special Support Centre for children aged seven to 11 with autism spectrum conditions or social and communication difficulties.

Location: Worthing

Tel: 01903 260761 or 01903 260138

Email: enquiries@dfed.co.uk

www.durringtoninfantjunior.co.uk

Field Place Infant School

(Speech and Language Unit)

Special Support Centre for children with speech, language and communication needs.

Location: Worthing

Tel: 01903 700234

Email: office@fieldplace.org.uk

www.fieldplaceinfantschool.org.uk

London Meed Primary School (Speech and Language Unit)

Special Support Centre for children with severe speech and language difficulties as their primary need. They may also have additional physical, medical, cognitive, social and emotional needs.

Location: Burgess Hill

Tel: 01444 232336

Email:  datamanager@londonmeedprimary.co.uk

www.londonmeedprimary.co.uk

Lyndhurst Infant School  (Special Support Centre)

Special Support Centre for children with autism or social communication difficulties.

Location: Worthing

Tel: 01903 235390

Email: office@lyndhurst-school.co.uk

www.lyndhurst-school.co.uk

Maidenbower Junior School (Special Support Centre)

Special Support Centre for children with autism.

Location: Crawley

Tel: 01293 883758

Email:  office@maidenbowerjunior.w-sussex.sch.uk

www.maidenbowerjunior.co.uk

Northgate Primary School  (Hearing Impaired Unit)

The Orchard is a Special Support Centre within the school for children with hearing impairments.

Location: Crawley

Tel: 01293 526737

Email: office@northgate.w-sussex.sch.uk

www.northgate.w-sussex.sch.uk

Orchards Junior School (Speech and Language Unit)

Specialist unit for pupils with speech and language difficulties who have an EHCP.

Location: Worthing

Tel: 01903 520202

Email: enquiries@orchardsjunior.school

www.orchardsjunior.school

Parklands Community Primary School (Special Support Centre)

Special Support Centre (Orchard Class and Forest Class) for pupils with social communication needs who have an EHCP.

Location: Chichester

Tel: 01243 788630

Email: office@parklands.w-sussex.sch.uk

www.parklands.w-sussex.sch.uk

River Beach Primary School (Special Support Centre)

Special Support Centre for pupils with a significant hearing loss.

Location: Littlehampton

Tel: 01903 725500

Email: office@riverbeach.w-sussex.sch.uk

www.riverbeach.w-sussex.sch.uk

Steyning C of E Primary School (Speech and Language Unit)

Special Support Centre for children with specific speech and language needs or disorders.

Location: Steyning

Tel: 01903 813420

Email: office@steyningprimary.w-sussex.sch.uk

www.steyningprimary.org.uk

St Margaret’s C of E Primary School (Physical Disability Unit)

Special Support Centre catering for children with significant physical or medical needs.

Location: Crawley

Tel: 01293 521077

Email:  office@st-margaretsifield.w-sussex.sch.uk

www.st-margaretsifield.w-sussex.sch.uk

Three Bridges Primary School (Speech and Language Unit)

Special Support Centre for children with specific speech and language difficulties.

Location: Crawley

Email:  office@threebridgesprimaryschool.co.uk

www.threebridgesprimaryschool.co.uk

West Park CE Primary School

Special Support Centre for children with physical disabilities and additional learning needs.

Location: Worthing

Tel: 01903 243099

Email: office@westparksch.co.uk

www.westpark.w-sussex.sch.uk

SPECIAL SUPPORT CENTRES IN MAINSTREAM SECONDARY SCHOOLS

The Angmering School# (Lavinia Norfolk Centre)

Secondary school for students aged 11 to 18. The Lavinia Norfolk Centre supports students with a physical, medical or sensory impairment (visual/hearing).

Location: Angmering

Tel: 01903 772351

Email: office@theangmeringschool.co.uk

www.angmeringschool.co.uk/students/learning-support

Hazelwick School# (Sensory Support Centre)

Caters for young people aged from 11 to 19. The Sensory Support Centre is for children with hearing or visual impairment.

Location: Crawley

Tel: 01293 403344

Email: office@hazelwick.org.uk

www.hazelwick.org

Oriel High School# (Additional Learning Needs)

Special Support Centre for children with severe dyslexia and/or speech and language difficulty.

Location: Crawley

Tel: 01293 880350

Email: office@oriel.w-sussex.sch.uk

www.oriel.w-sussex.sch.uk

Steyning Grammar School# (Additional Learning Needs)

Day and residential school catering for young people aged 11 to 18. A Special Support Centre supports pupils with additional educational needs.

Location: Steyning

Lower school tel: 01903 814786

Email: csoffice@sgs.uk.net

Upper school tel: 01903 814555

Sixth form tel: 01903 810526

Email: sgs@sgs.uk.net

www.sgs.uk.net

Thomas Bennett Community College# (Special Support Centre)

Secondary school for young people aged 11 to 18. Has a Special Support Centre for children with autism.

Location: Crawley

Tel: 01293 526255

Email: admin@thomasbennett-tkat.org

www.thomasbennett-tkat.org

Warden Park Secondary Academy (Additional Learning Needs)

Special Support Centre for children with severe specific learning difficulties, speech and language needs and additional learning needs.

Location: Haywards Heath

Tel: 01444 457881

Email: admin@wardenpark.co.uk

www.wardenpark.co.uk

Worthing High School

Caters for young people aged 11 to 16. Has a Special Support Centre for children with additional learning needs.

Location: Worthing

Tel: 01903 237864

Email: office@worthinghigh.net

www.worthinghigh.net

STATE-MAINTAINED SPECIAL SCHOOLS

Cornfield School

For boys and girls aged nine to 16 who have social, emotional and/or behavioural difficulties.

Location: Littlehampton

Tel: 01903 731277

Email: office@cornfieldschool.org.uk

www.cornfield.w-sussex.sch.uk

Fordwater School#

Co-educational school for two to 19 year olds with severe and complex learning difficulties.

Location: Chichester

Tel: 01243 782475

Email: office@fordwatersch.co.uk

www.fordwatersch.co.uk

Herons Dale Primary School

A generic primary school for children aged four to 11 with a wide spectrum of learning difficulties.

Location: Shoreham-by-Sea

Tel: 01273 596904

Email: office@heronsdale.co.uk

https://heronsdale.co.uk

Littlegreen Academy

For boys aged seven to 16 who have social, emotional, and mental health needs. Many children also have a range of additional needs including autism, ADHD, OCD, anxiety, dyslexia and speech and language delay. Boarding provision.

Location: Chichester

Tel: 023 9263 1259

Email: office@littlegreenschool.co.uk

www.littlegreen.w-sussex.sch.uk

Manor Green College#

Secondary school for students aged 11 to 19 who experience a wide range of learning difficulties.

Location: Crawley

Tel: 01293 520351

Email: office@mgcollege.co.uk

www.manorgreen-college.w-sussex.sch.uk/web

Manor Green Primary School

Caters for pupils aged from two to 11 years with a wide range of learning difficulties.

Location: Crawley

Tel: 01293 526873

Email:  office@manorgreenprimary.w-sussex.sch.uk

www.manorgreenprimary.w-sussex.sch.uk

Oak Grove College

A secondary school providing special education for students with learning difficulties from 11 to 16 years.

Location: Worthing

Tel: 01903 708870

Email: office@oakgrovecollege.org.uk

https://oakgrovecollege.org.uk

Palatine Primary School

Primary school for children with complex needs, including: severe learning difficulties, profound and multiple learning difficulties, moderate learning difficulties and autistic spectrum conditions.

Location: Worthing

Tel: 01903 242835

Email: office@palatineschool.org

https://palatineschool.org

Queen Elizabeth II Silver Jubilee School#

Caters for two to 19 year olds with severe or profound and multiple learning difficulties or complex needs.

Location: Horsham

Tel: 01403 266215

Email: office@qe2school.co.uk

www.queenelizabeth2.w-sussex.sch.uk

St Anthony’s School

Community special school for five to 16 year olds with moderate learning difficulties and additional barriers to learning.

Location: Chichester

Tel: 01243 785965

Email: office@st-ants.org

www.st-ants.org

Woodlands Meed College#

For young people aged 14 to 19 with special educational needs.

Location: Burgess Hill

Tel: 01444 244133

Email: office@woodlandsmeed.co.uk

www.woodlandsmeed.co.uk

Woodlands Meed School

Special needs school for children aged two to 14 years with a wide range of special educational needs.

Location: Burgess Hill

Tel: 01444 244133

Email: office@woodlandsmeed.co.uk

www.woodlandsmeed.co.uk

INDEPENDENT AND SECTION 41 SPECIAL SCHOOLS

Brantridge School

Day and residential school for boys aged six to 11 with social, emotional and mental health difficulties, autism, Asperger’s syndrome, or ADHD and associated learning difficulties.

Location: Haywards Heath

Tel: 01444 400228

Email: schooloffice@brantridge-school.co.uk

https://brantridgeschool.org

Chailey Heritage School# (out-of-county)

A charitable special school for children and young people aged three to 19 years with complex physical disabilities, high health needs, sensory impairments and associated communication and learning difficulties.

Location: North Chailey

Tel: 01825 724444

www.chf.org.uk/school

Farney Close School Ltd#

A mixed residential school for children aged nine to 18 years with social, emotional and behavioural difficulties. Also supports pupils with Asperger’s and Tourette syndrome, moderate learning difficulties, dyslexia or moderate speech and language difficulties.

Location: Haywards Heath

Tel: 01444 881811

www.farneyclose.co.uk

Hillcrest Manor House School#

Special school catering for boys and girls aged from seven to 18 with social, emotional and mental health needs.

Location: Slinfold

Tel: 01403 790939

Email: manorhouse@hillcrestcs.co.uk

www.hillcrestchildrensservices.co.uk/school_home/hillcrest-manor-house-school

Ingfield Manor School#

A day and weekly boarding school for children aged three to 19 years with neurological motor impairments such as cerebral palsy. Pupils have a range of abilities and associated learning difficulties.

Location: Billingshurst

Tel: 01403 782294

Email: Ingfield.manor@ambitoeducation.co.uk

www.ingfieldmanorschool.co.uk

LVS Hassocks#

Independent school for young people aged from 11 to 19 who have autism – usually high functioning autism or Asperger’s Syndrome.

Location: Sayers Common

Tel: 01273 832901

Email: info@lvs-hassocks.org.uk

www.lvs-hassocks.org.uk

Muntham House School#

Residential and day school for boys aged eight to 19 years who have emotional and social difficulties with mental health problems, autism or ADHD.

Location: Barns Green, Horsham

Tel: 01403 730302

Email: office@muntham.org.uk

www.muntham.org.uk

New Barn School#

Residential and day school for boys and girls aged seven to 19 with high

functioning autism and associated difficulties.

Location: Broadbridge Heath

Tel: 01403 289606

Email: info@treehouseeducare.co.uk

www.newbarnschool.co.uk

Philpots Manor School#

Day and residential school for children and young people aged from seven to 19 who have a range of social, emotional, behavioural and mental health needs and social communication difficulties.

Location: West Hoathly

Tel: 01342 810268

Email: info@philpotsmanorschool.co.uk

http://philpotsmanorschool.co.uk

Seadown School

For children and young people aged six to 16 with a variety of special educational needs including moderate learning difficulties, dyslexia, autistic spectrum disorder, ADHD and behavioural, emotional, mental health and social difficulties.

Location: Worthing

Tel: 01903 608750

Email: office@seadownschool.co.uk

www.seadownschool.co.uk

Springboard Education#

For children and young people aged five to 18 with emotional, behavioural, social and communication difficulties including Asperger’s and attention deficit conditions.

Location: Lancing

Tel: 01903 605980

Email: office@springboardeducation.co.uk

www.springboardeducation.co.uk

Section four: Directories

Further and higher education directory

Please note: a number of special schools, and special support centres in mainstream schools have provision up to 19 years. To save space they are listed in short here with a page number that takes you to their full details in the education directory.

FURTHER AND HIGHER EDUCATION ORGANISATIONS

Disabled Students’ Allowances

See Student Finance England

First-tier Tribunal (Special Educational Needs and Disability)

Tribunal that hears appeals by parents against decisions made by their local education authority concerning their child’s education, also able to make recommendations regarding health and social care.

Tel: 01325 289350

Email: sendistqueries@hmcts.gsi.gov.uk

www.gov.uk/courts-tribunals/first-tier-tribunal-special-educational-needs-and-disability

The National Careers Service

Information and advice about education, training and work. Webchat or email form available on website.

Tel helpline: 0800 100 900

Text messages: 07766 413219

Textphone: 08000 968336

www.nationalcareersservice.direct.gov.uk

National Union of Students (NUS)

Represents the interests of students. Every university and most colleges have a student union affiliated to the NUS, which provides support to students and information and advice for prospective students.

Tel: 0845 521 0262

www.nus.org.uk

www.facebook.com/ationalunionofstudents

Natspec

Online directory of organisations offering specialist further education and training for students with learning difficulties and/or disabilities.

Tel: 0115 854 1322

Email: info@natspec.org.uk

www.natspec.org.uk

Student Bursary Support Service

Online service used to administer student support for the Care to Learn scheme and the 16 to 19 Bursary Fund for vulnerable students.

www.gov.uk/guidance/student-bursary-support-service

Student Finance England

Government website with details of funding that students are entitled to, including Disabled Students’ Allowance.

Tel: 0300 100 0607

Textphone: 0300 100 0622

www.gov.uk/student-finance/extra-help

University and College Admission Service (UCAS)

Central organisation that processes university applications. Can support young people making post-GCSE choices and those applying for undergraduate/postgraduate courses.

Tel: 0371 468 2568 (year 11 students)

Tel: 0371 468 0468 (undergraduates)

www.ucas.com

FURTHER AND HIGHER EDUCATION SETTINGS

MAINSTREAM SCHOOLS WITH SIXTH FORMS IN WEST SUSSEX

The Angmering School see here

Bishop Luffa School

Location: Chichester

Tel: 01243 787741

www.bishopluffa.org.uk

Chichester High School

Location: Chichester

Tel: 01243 787014

Email: office@chs-tkat.org

www.chs-tkat.org

Felpham Community College

Location: Bognor Regis

Tel: 01243 826511

Email: fcc@felpham.org.uk

www.felpham.com

Hazelwick School see here

The Holy Trinity Church of England Secondary School

Location: Crawley

Tel: 01293 423690

Email: office@holytrinity.w-sussex.sch.uk

www.holytrinity.w-sussex.sch.uk

Ifield Community College

Location: Crawley

Tel: 01293 420500

Email: office@ifieldcc.co.uk

www.ifieldcc.w-sussex.sch.uk

Imberhorne School

Location: East Grinstead

Tel: 01342 310986

Email: sixthform@imberhorne.co.uk

www.imberhorne.co.uk

The Littlehampton Academy

Location: Littlehampton

Tel: 01903 711120

Email: office@tla.woodard.co.uk

www.tla.woodard.co.uk

Midhurst Rother College

Location: Midhurst

Tel: 01730 812451

Email: Sarah.banbury@mrc-academy.org

www.mrc-academy.org

Oriel High School see here

The Regis School

Location: Bognor Regis

Tel:01243 871010

Email: enquiries@theregisschool.co.uk

www.theregisschool.co.uk

Sackville School

Location: East Grinstead

Tel: 01342 410140

Email: secretary@sackvilleschool.org.uk

www.sackville.w-sussex.sch.uk

Shoreham Academy

Location: Shoreham-by-Sea

Tel: 01273 274100

Email: enquiries@shoreham-academy.org

www.shoreham-academy.org

Sir Robert Woodard Academy

Location: Sompting

Tel: 01903 767434

Email: enquiries@srwa.woodard.co.uk

www.srwa.woodard.co.uk

Steyning Grammar School see here

St Wilfrid’s Catholic School

Location: Crawley

Tel: 01293 421421

Email: office@stwilfrids.com

www.stwilfrids.com

Thomas Bennett Community College see here

The Weald Community School and Sixth Form

Location: Billingshurst

Tel: 01403 787200 (main school)

Tel: 01403 787283 (sixth form)

Email: office@theweald.org.uk

www.theweald.org.uk

MAINSTREAM SIXTH FORM COLLEGES

College of Richard Collyer

Location: Horsham

Tel: 01403 210822

Email: admin@collyers.ac.uk

www.collyers.ac.uk

SPECIALS SCHOOLS WITH 16+ PROVISION

Fordwater School see here

Manor Green College see here

Queen Elizabeth II Silver JubileeSchool see here

Woodlands Meed College see here

INDEPENDENT AND SECTION 41 SPECIAL SCHOOLS WITH 16+ PROVISION

Chailey Heritage School see here

Farney Close School see here

Hillcrest Manor House see here

Ingfield Manor School see here

LVS Hassocks see here

Muntham House School see here

New Barn School see here

Philpots Manor School see here

Springboard Education see here

FE COLLEGES

Chichester College (including Brinsbury Campus, Pulborough)

Location: Chichester

Tel: 01243 786321

Email: info@chichester.ac.uk

www.chichester.ac.uk

Crawley College (including Horsham Training Centre)

Location: Crawley

Tel: 01293 442213

Email: info@crawley.ac.uk

www.crawley.ac.uk

Haywards Heath College

Location: Haywards Heath

Tel: 01444 711900

Email: enquiries-worthing@gbmc.ac.uk

www.haywardsheath.ac.uk

Northbrook Metropolitan College

Location: Worthing and Shoreham

Tel: 0845 155 6060

Email: enquiries-worthing@gbmc.ac.uk

www.northbrook.ac.uk

Plumpton College (out of county)

Practical courses including horticulture, floristry and landscaping. Also offers apprenticeships and supported internships.

Location: Plumpton

Tel: 01273 890454

www.plumpton.ac.uk

Worthing College

Location: Worthing

Tel: 01903 275755

Email: info@worthing.ac.uk

www.worthing.ac.uk

OTHER OPTIONS

Asphaleia Training

Runs provision for young people aged 14 to 25 who may find mainstream education a struggle.

Tel: 01903 823546

Email: headoffice@asphaleia.co.uk

www.asphaleia.co.uk

East Clayton Farm

Offers alternative provision for young people primarily at risk from permanent school exclusion.

Tel: 01903 741011

Email: info@lorica.org.uk

www.eastclaytonfarm.org.uk

West Sussex Alternative Provision College (WSAPC)

For young people (up to year 11 only) who have been permanently excluded, are at risk of exclusion or cannot attend school for medical reasons. Centres located across the county – see website for more information.

Tel: 0330 222 5209

Email: fairaccess@westsussex.gov.uk

http://apcollege.co.uk

LOCAL UNIVERSITIES

University of Brighton

Tel: 01273 644644 (admissions)

Email: admissions@brighton.ac.uk

www.brighton.ac.uk

University of Chichester

Tel: 01243 816000

Email: admissions@chi.ac.uk

www.chi.ac.uk

University of Sussex

Location: Falmer, Brighton

Tel: 01273 606755

Email: study@sussex.ac.uk

www.sussex.ac.uk

Section four: Directories

Grantmaking directory

NB: If you wish to apply for a grant, check the organisation’s website for detailed information on eligibility criteria and whether to apply by online form, email or phone. Some grants require a professional to refer you or support your application, while others have restrictions on how the money can be used.

3H Fund

Grants are awarded to disabled people on a low income and their families and carers to take holidays in the UK. Complete an application form on the website.

Tel: 01892 860207

Email: info@3hfund.org.uk

www.3hfund.org.uk

Ataxia UK

Helps people with ataxia apply for grants to fund things such as equipment, home adaptations and independence. For further information visit the website.

Tel: 0800 995 6037

Email: help@ataxia.org.uk

www.ataxia.org.uk

Brittle Bone Society

Provides grants for wheelchairs or essential specialist equipment for people with Osteogenesis imperficta (brittle bone disease.) Initial enquiries should be made by phone or email. Grant applications must include a letter of support from a relevant professional such as an occupational therapist, for example.

Tel: 01382 204446

Email: bbs@brittlebone.org

www.brittlebone.org

Bruce Wake Charitable Trust

Grants are awarded towards the provision of sport and leisure activities people with physical disabilities. Applications on behalf of individuals must be made through a charitable organisation or equivalent recognised body. Guidelines on how to apply are available on the website.

Tel: 0344 879 3349

www.brucewaketrust.co.uk

Buttle UK

Tailored grants for children and young people who have experienced a crisis that has recently had a significant and enduring impact on their social and emotional wellbeing and educational engagement. Allocates grants for boarding school fees in cases where children are on the ‘edge of care. See website for eligibility guide.

Tel: 020 7828 7311

www.buttleuk.org

Carer Health and Wellbeing Fund

West Sussex grants to enable carers to enhance their health and wellbeing. You can apply via Carers Support West Sussex.

Tel: 0300 028 8888

Email: info@carerssupport.org.uk

www.carerssupport.org.uk

Caudwell Children

Provides funding towards equipment treatment and therapies for children with various disabilities and illnesses in the UK, and holidays for children with life-threatening conditions.

Tel: 0345 300 1348

Email: charity@caudwellchildren.com

www.caudwellchildren.com

Cheyne Charity for Children with Cerebral Palsy

Provides grants to children and young people with cerebral palsy towards the cost of essential equipment and respite breaks. It’s helpful if the application is supported by a professional (e.g. a physiotherapist or doctor.)

Tel: 01444 450901

www.cheynecharity.org

Chichester Welfare Trusts

Provides grants for people who are in need, sick, disabled or infirm and live in the city of Chichester or surrounding area.

Tel: 07973 195421

Email: michaelwoolleyuk@gmail.com

Child Brain Injury Trust (CBIT)

Provides small grants, up to a maximum of £125, to any family supported by the Trust to reduce isolation and enable families to participate in social activities. It can also be used for equipment and items that make life more comfortable for families.

Tel: 01869 341075

Email: info@cbituk.org

https://childbraininjurytrust.org.uk

Children’s Heart Federation (CHF)

Grants for travel costs while a child is in hospital, home appliances, and specialist equipment. Application forms are available from the website or by calling the number below. Application forms must be completed by a professional who knows your circumstances. At the time of going to press it is unable to provide family grants due to funding restrictions. Check website for up to date information.

Tel: 0300 561 0065

Email: info@chfed.org.uk

www.chfed.org.uk

Children Today

Grants towards specialised equipment (e.g. electric wheelchairs, walking aids, trikes, lifting aids, adapted car seats, sensory equipment, and posturepedic sleep equipment. For further information call the charity on the number below.

Tel: 01244 335622

Email: info@childrentoday.org.uk

www.childrentoday.org.uk

Disabled Facilities Grant

Local council funding towards the costs of adapting the home and/or to provide better facilities within it. Grants are means tested, unless for a child under 18. The maximum grant available is £30,000. For more information contact the housing or environmental health department of your local district council.

www.gov.uk/disabled-facilities-grants

Dreams Come True

Provides funding and support to help children and young people aged 2 to 18 who have a serious or life-limiting medical condition to fulfil their dreams. Referrals must be made by a professional.

Tel: 0800 018 6013

Email: info@dreamscometrue.uk.com

www.dreamscometrue.uk.com

Family Action

Welfare and educational grants to families on benefits or low incomes. See website for details.

Email: grants.enquiry@family-action.org.uk

www.family-action.org.uk

Family Fund

Grants to families with a disabled child or young person aged 0-17 eligible for: Universal Credit, Child Tax Credit; Working Tax Credit; Income-based Job Seekers Allowance; Income Related Employment Support Allowance; Income Support; Housing Benefit; and Pension Credit. Grants can be used for washing machines, cookers, beds, outings and holidays, and specialist equipment, for example.

Tel: 01904 550055

Email: info@familyfund.org.uk

www.familyfund.org.uk

Family Holiday Association

Funding to enable families on low incomes with children under 18 to have a holiday. Applications must be made via a professional such as a social worker or GP. Applications for a holiday for families with a disabled child will only be considered if they are not eligible for a grant from the Family Fund. However, they can be referred for a group trip or day out.

Tel: 020 3117 0650

Email: info@fhaonline.org.uk

www.familyholidayassociation.org.uk

Florence Nightingale Aid in Sickness Trust

Grants to people who are sick, in poor health or disabled and require medical services and/or equipment to improve their quality of life. For example, for convalescent and respite care, medical aids, household aids, sensory equipment, communication aids, and fridges for essential drug storage. Applications must have a supporting letter from a healthcare professional or social worker and for a grant to be considered it must be confirmed that funding can’t be provided by the local authority or NHS.

Tel: 020 7998 8817

Email: ann.griffiths@fnaist.org.uk

http://fnaist.org.uk

Gardner’s Trust for the Blind

Grants towards education, training and household maintenance for people who are blind or partially-sighted. Applications must be made via a professional, such as a teacher, GP, or social worker. Criteria and a link to the application form are available at the website below.

117 Charterhouse Street

London, EC1M 6AA

Tel: 020 7253 3757

https://grants-search.turn2us.org.uk/grant/gardners-trust-for-the-blind-12805

Glasspool Charity Trust

Provides grants to people in need. Applications must be made via an eligible agency such as a charity, see website for details.

Tel: 020 3141 3161

Email: grants@glasspool.org.uk

www.glasspool.org.uk

Guide Dogs – children and young people’s services

Grants or children and young people aged 18 and under towards technology or sensory items. Children and young people aged 3 to 18 years with a visual impairment can get a free iPad or iPhone through their ‘Tech for All’ scheme. See website for further details.

Tel: 0800 781 1444

Email: cypservices@guidedogs.org.uk

www.guidedogs.org.uk

Happy Days Children’s Charity

Grants for young people aged 3 to 17 with learning difficulties, physical or mental disabilities, emotional challenges and those with acute, chronic or life-limiting illnesses, bereaved children and those who are young carers to go towards the cost of days out and holidays. See website for full details.

Tel: 01462 530710

Email: enquiries@happydayscharity.org

www.happydayscharity.org

Joseph Patrick Trust

Grants to children and adults with muscular dystrophy or a related neuromuscular condition for powered wheelchairs, mobility scooters, and adaptatations to them.

Tel: 0800 652 6352

Email: info@musculardystrophyuk.org

www.musculardystrophyuk.org

Kidney Care UK

Grants to children and adults with kidney disease towards domestic bills, household goods, travel expenses to hospital, education and training costs and holidays.

Tel: 01420 541424

Email: info@kidneycareuk.org

www.kidneycareuk.org/get-support

Lawrence Atwell’s Charity (Skinners’ Company)

Grants for young people aged 16 to 26 from low-income families to help them move into work and develop vocational qualifications.

Tel: 020 7213 0561

Email: atwell@skinners.org.uk

www.skinners.org.uk/grants-and-trusts/atwell

League of the Helping Hand

Grants for people on a very low income who receive the appropriate welfare benefits and have exhausted all other funding sources including statutory funding, occupational, local and specialist charities. We help those with physical and diagnosed mental health conditions, learning disabilities, and people caring for an adult or child with a disability.Application forms (available on the website) must be completed by an official agency such as social services.

Tel: 01444 236099

Email: secretary@lhh.org.uk

www.lhh.org.uk

Lifeline 4 Kids

Provides specialist equipment such as electric wheelchairs, mobility aids and assistive technology for children with disabilities from birth to 18. See website for how to apply.

Email: appeals@lifeline4kids.org

www.lifeline4kids.org/application

MacAndrew Sussex Trust

Grants to ‘help suitable boys as part of their education and with a view to character building through sea training. Help poor and deserving young people to get a good start in life.’ Applications in writing to the trustee at the address below.

Roger Heber Clow, Chair

4th Floor, Park Gate

161-163 Preston Road

Brighton, BN1 6AF

Tel: 01273 56256

Email: roger@friend-james.co.uk

Make-A-Wish Foundation

Grants wishes for children aged three to 17 who have a critical illness.

Tel: 0118 304 2776

Email: referrals@makeawish.org.uk

www.make-a-wish.org.uk

Margaret Champney Rest and Holiday Fund

Small grants for carers to take a short break or holiday. Applications must be made via a social worker, community nurse or other relevant professional, see website for details.

Tel: 01394 388746

Email: ogilviecharities@btconnect.com

www.ogilviecharities.org.uk

Miracles

Crisis grants for families living in poverty who have children with a life-changing or life-limiting diagnosis. Grants are awarded on a 24-hour turnaround for families who have nowhere else to turn to cover: hospital travel and accommodation, food, clothing, additional medical equipment or help to halt evictions, reconnect house utilities, home medical needs and house adaptations They also offer respite breaks to children being treated for serious illnesses. Applications must be made by a social worker or other professional working with the family.

Tel: 01903 775673

Email: miraclesthecharity@gmail.com

www.miraclesthecharity.org

Mobility Trust

Provides powered wheelchairs and scooters to disabled people who cannot obtain one from statutory sources, other charitable means, or purchase the equipment themselves. See website for eligibility form.

Tel: 0118 984 2588

Email: mobility@mobilitytrust.org.uk

https://mobilitytrust.org.uk

Motability

Grants towards the costs of purchasing a car and adaptations such as swivel seats, hand controls, wheelchair accessible vehicles and up to 40 hours of driving lessons.

Tel: 0300 456 4566

www.motability.org.uk

my AFK

Funding for mobility equipment for children and young people aged under 25.

Tel: 020 8347 8111

Email: mobilityservices@my-afk.org

www.my-afk.org/apply-for-mobility-equipment

Newlife, the Charity for Disabled Children

Grants towards equipment such as beds, buggies, wheelchairs, seating systems and more for disabled children under 19. To find out if you are eligible, contact the care services team on the number below.

Tel: 0800 902 0095

Email: nurse@newlifecharity.co.uk

https://newlifecharity.co.uk

React

Grants towards specialist equipment, travel and hospital expenses, respite breaks and end of life support for families on a low income caring for a child with a life-threatening or life-limiting illness. See website or call for more details.

Tel: 020 8940 2575

Email: react@reactcharity.org

https://reactcharity.org

Sequal Trust

Provides electronic communications aids for children and adults who are non-verbal, or have learning and communication difficulties. By working with their SALT they find the most suitable device for a person.

Tel: 01691 624222

Email: info@thesequaltrust.org.uk

www.thesequaltrust.org.uk

Starlight Children’s Foundation

Grants personalised wishes to children and young people aged three to 17 with life-threatening or life-shortening illnesses. Nominate a child by completing the wish application form on the website.

Tel: 020 7262 2881

www.starlight.org.uk

Sullivan’s Heroes

Supports families seeking to raise funds for home adaptations to meet the needs of a disabled child where the costs of the project exceed that of the government Disabled Facilities Grant (DFG). Also provides grants to help meet the costs of building projects.

Email: hello@sullivansheroes.org

www.sullivansheroes.org

www.facebook.com/sullivansheroes

Sure Start Maternity Grant

Government grant of up to £500 towards the cost of a new baby for people on low incomes and certain benefits. Apply from 11 weeks before your due date to six months after the birth. Also available if you’ve taken on responsibility for a child under a year old.

Tel: 0800 169 0140

www.gov.uk/sure-start-maternity-grant

Sussex Snowdrop Trust

Financial support for families of children with life-threatening illnesses, which can be used for household bills; specialist equipment; computers; and transport costs. See website for eligibility and catchment area.

Tel: 01243 572433

Email: office@snowdroptrust.com

www.thesussexsnowdroptrust.com

Talisman Charitable Trust

Grants to help with education, health, housing and disabilities to UK individuals described as ‘going short’. Applications should be made via a charitable organisation, local authority or Citizens Advice. See website for guidelines.

www.talismancharity.org

Tourettes Action

Grants of up to £500 for equipment to support people with Tourette syndrome in their every day life. See website for application form and guidelines.

Tel: 0300 777 8427

www.tourettes-action.org.uk

Tree of Hope Children’s Charity

Support and resources to help families fundraise for their disabled or sick children. Families launching their campaign through the charity can access Gift Aid, corporate donations, trusts and grants.

Tel: 01892 535525

Email: info@treeofhope.org.uk

www.treeofhope.org.uk

Variety, The Children’s Charity

Grants to disabled children and their families for specialist equipment that isn’t available through statutory services, such as mobility equipment, hoists and communication aids. Full guidelines and application forms available on the website, or phone/email the Grants Programme Manager for more information.

Tel: 020 7428 8120

Email: grants@variety.org.uk

www.variety.org.uk

Whizz-Kidz

Provides mobility equipment to children under 18 with a disability that permanently affects their mobility who have not been able to get the required equipment or funding through the NHS.

Tel: 0800 151 3350

Email: kidzservices@whizz-kidz.org.uk

www.whizz-kidz.org.uk

Other Sources of Support

Lions Clubs, Masonic Lodges, Rotary Clubs, the Round Table and Soroptimists are known to be active in their local communities supporting individuals and families in need. You can find your local branch by searching for the organisation and ‘West Sussex’, or your town.

https://lionsclubs.co/Public

www.rotarygbi.org

www.roundtable.co.uk

https://sigbi.org

https://sussexmasons.org.uk

We would also recommend Turn2us, which has an online directory of grants and financial support:

www.turn2us.org.uk

Section four: Directories

Disability jargon buster

Our jargon buster lists words, acronyms and phrases that may be new to you but are often used in health, social care and education. Although it’s not completely comprehensive, we hope that it will help you to understand some of the language that’s most commonly used by professionals.

AAC (Augmentative and Alternative Communication) – communication that supports or replaces the spoken word. Methods vary from low-tech picture cards to high-tech electronic speech generating devices.

ABI (Acquired Brain Injury) – medical term referring to an injury to the brain occurring after birth.

Academy – a school that is self-governing and funded direct from central government, not the local authority, giving it more freedom over its budget, how it structures the school day, and so on.

Accessible Housing – homes with adaptations such as ramps, handrails, wide doors, raised electric sockets or wet rooms to make them accessible to disabled people.

Access to Work – a grant providing practical support to enable disabled people to start work and/or stay in work. Support can include help with transport costs, equipment needed for the workplace, a communicator at interviews or a support worker to help you in the workplace.

Acupuncture – complementary therapy where fine needles are inserted into points on the body to help a range of health conditions.

Acute – describes the rapid onset of an illness or an illness that is short in duration but progresses rapidly.

ADL (Activities for Daily Living) – everyday tasks like eating, bathing, dressing, moving around and so on.

Adults’ CarePoint – the initial point of contact for help from social care for adults in West Sussex.

Advice – term for reports provided by both parents and professionals as part of an Education Health and Care Needs Assessment.

Advocacy – independent support representing and acting on behalf of an individual, family or group. Often used to support people with learning disabilities or other SEND.

AFO (Ankle Foot Orthosis) – splint worn on the lower leg to support and straighten muscles and correct their function.

Ambulatory – medical term relating to the ability to walk.

Annual review – yearly progress meeting between teachers, parents and children for a child who has an Education Health and Care Plan.

Appointee – a parent, friend or professional who acts on behalf of someone to manage their benefits.

Apprenticeship – work-based schemes where a person works with experienced staff to gain job-specific skills that lead to vocational qualifications. Open to over 16s who are not in full-time education.

AT (Assistive Technology) – system or device designed to increase independence for disabled people, e.g. specialist computer software.

Audiologist: clinicians who provide assessment, diagnosis and rehabilitation of hearing and balance problems. Includes interventions such as hearing aids to reduce barriers to communication created by hearing loss.

Blue Badge – parking permit that allows eligible disabled people or their carers to park nearer to where they need to go.

Bobath Therapy – combination of physiotherapy, occupational therapy and speech and language therapy. Aims to maximise movement, communication and other functions.

Botox (Botulinum Toxin A) – a powerful toxin used in small doses to provide safe and effective relief from tight muscles. Commonly used in the treatment of cerebral palsy and dystonia.

BSL (British Sign Language) – a visual form of communication using hands, facial expression and body language; mainly used by people who are deaf or hearing impaired.

BTec vocational qualifications, often studied by 16 to 19 year olds, that are being phased out.

Buddy Scheme – pairs people with and without disabilities so that a disabled young person can have peer support and increase their independence.

Bursary – a sum of money given to a person to help them to study.

CAMHS (Children and Adolescent Mental Health Service) – mental health support for children, young people under 18 and their families.

Care Package – the services and support provided following assessment by social services.

Carer’s Allowance – a taxable benefit for someone over 16 who spends at least 35 hours per week caring for a disabled person and earns less than £128 per week after taxes and expenses.

Carer’s Assessment – an evaluation of a carer’s needs carried out by social care in order to decide what help is needed and available.

CBT (Cognitive Behavioural Therapy) – a number of therapies that involve trying to change the way a person thinks and behaves. Often used in treating depression, anxiety disorders, low self-esteem and/or behavioural problems.

Child Tax Credits – see Legacy Benefits.

Child Development Centre (CDC) – multi-purpose clinic housing various children’s health professionals including paediatricians, physiotherapists, occupational therapists, and speech and language therapists.

Children’s Community Nursing Team – trained nurses who provide care to children and young people up to the age of 18 outside of hospital.

Chronic – describes an illness or condition that lasts a long time.

Circle of Support – informal group of people (usually family and friends) who meet together on a regular basis to help somebody accomplish their personal goals in life. Sometimes used in supporting people with SEND.

Clinical Child Psychologist – a health professional who assesses, diagnoses and treats children and young people with mental health issues. May also offer counselling for families in difficulty.

Cognitive Development – the way children learn to process information, learn language, and develop skills in perception, problem solving and so on.

Community Dentist – specialist dental service for people with SEND and other difficulties.

Community Equipment – tools that aid daily living for example: wheelchairs; hoists; lifts; beds; eating utensils; raised toilet seats.

Community Paediatrician/ Community Child Health Doctor – doctor specialising in the health and development of children.

Conductive Education – method of teaching children with motor disorders such as cerebral palsy, which seeks to maximise mobility and independence, and increase self-esteem and social interaction.

Congenital – relating to conditions that are present at birth.

Consultant in Rehabilitation Medicine – specialist doctor leading a multidisciplinary team in treatment and prevention for people with complex disabilities. Expertise includes wheelchairs, orthotics and assistive technology.

Continence Team – nurse-led team providing a tier 2 targeted specialist continence service to children and young people. Supports families whose children have ongoing difficulties with bladder or bowel control, constipation, withholding and other toileting issues.

Continuing Care – fully funded health care provided in the community to a child or adult with a disability, injury or illness over an extended period of time.

Co-production – an approach to working when all everyone works together to agree outcomes, recommendations, plans, actions and materials. This can happen on an individual level, to plan a child’s support, or at a strategic level to plan and deliver services.

CT (computerised tomography) or CAT (computerised axial tomography) scan – creates 3D images of structures inside the body to monitor and diagnose conditions.

Developmental Delay – used when a child meets milestones much later than expected for their age in one or more of: physical; personal and social skills; thinking and learning; speech and communication.

Developmental Disorder – umbrella term for a number of conditions affecting neurological development, such as autism, learning disabilities and global developmental delay.

Differentiation – teaching approach that recognises the different rates and ways that students learn. Used in the classroom to ensure they have the best possible chance of learning. Includes adaptations to the National Curriculum if needed.

Direct Payments – funding paid directly to disabled people who have been allocated a Personal Budget so that they can choose and organise their own care or services.

Disability Equality Duty – a legal requirement for public bodies to promote equality for disabled people. Also requires public bodies to issue a Disability Equality Scheme setting out how disabled people have been involved in developing it, what improvements will be made to policy and service delivery and how information will be collected to demonstrate how the public body in question has met its targets.

Disabled Facilities Grant – local authority grant towards the cost of adapting a home for someone who is disabled.

Disabled Students’ Allowance – a grant to help students with extra costs occurring as a direct result of a disability, ongoing health condition, mental health condition or specific learning difficulty.

Disagreement Resolution – an arrangement for resolving disputes between parents of children with SEND and their local authority, school, health or care agency. Must include an independent facilitator.

Disapplication – removal or lifting of any element of the National Curriculum for a child with SEND.

Discrimination by Association – when a person is treated less favourably because they are linked to someone with a protected characteristic under the Equality Act 2010 (e.g. not employing the mother of a disabled child).

DLA (Disability Living Allowance) – tax-free benefit for disabled children under 16 who need help with personal care and/or mobility.

DSA (Disabled Students’ Allowance) – additional financial help for disabled people who want to study in higher education.

Dysphagia – medical term referring to a difficulty with swallowing.

Early Bird – training programme from the National Autistic Society to help parents of children with autism to help their communication and development and social skills.

Early Help Assessment – assessment of a child and family to identify needs at an early stage and enable suitable interventions to be put in place to support them.

Educational Psychologist – work in education, the community and with families to assess children’s learning, well-being and development and identify difficulties that hinder learning and participation in school and other activities. They might assess a child during an EHC Needs Assessment.

Education Supervision Order – a court ordered plan made by the inclusion service with a child, parents, school and other agencies to achieve regular school attendance.

EHC Needs Assessment – the process by which children and young people with SEND are assessed for an Education, Health and Care Plan.

EHC Plan or EHCP (Education, Health and Care Plan) – for children and young people aged up to 25 who need more help in school or college than is normally available through standard special educational needs support. The plan should be drawn up by the local authority in co-production with the young person, their parents and relevant professionals from education, health and social care.

Equality Act (2010) – legislation that improves the civil rights of disabled people in relation to education, employment, accessing goods and services, and for disabled people who rent property and wish to make improvements to their home. Also requires all public bodies to actively promote equality of opportunity for disabled people.

EYFS (Early Years Foundation Stage) – government framework for the learning and development of children aged from birth to five years. All providers of education and care of young children must follow the requirements of the framework.

Fine Motor Skills – use of smaller muscle groups and hand-eye co-ordination to carry out precise tasks like writing, picking up objects, and fastening clothes.

First-tier Tribunal (SEND) – independent national tribunal that hears parents’ and young people’s appeals against local authority decisions about EHC Assessments, EHC Plans and claims of disability discrimination against schools.

Fully Accessible Toilet – a toilet equipped with an adult-sized changing bench, hoist and space for two carers to see to the toileting/changing needs of a disabled person.

Further Education (FE) – learning for young people between the ages of 16 and 19. Includes school sixth forms, sixth form colleges and further education (FE) colleges.

Gait – term to describe the way in which a person walks.

Gaiters – type of splint used to straighten elbows or knees.

Gastrostomy – an artificial surgical opening in the stomach to aid feeding and nutritional support.

GDD (Global Developmental Delay) – term to describe when a child has delayed development in two or more of the following: thinking and learning; personal and social skills; physical; speech and communication.

GP (General Practitioner) – a doctor based in a health centre or practice who treats acute and chronic illnesses and provides preventive care to patients.

Graduated Approach – way of working with children with SEND in education settings that gradually brings in additional support and expertise to support a child’s learning and development, using an ‘assess, plan, do, review’ model.

Gross Motor Skills – use of the large muscles in the body that enable standing, walking, lifting, and sitting.

Health Visitors – qualified nurses who work mainly with families who have children under five. They sometimes work with families of older children with SEND.

Higher Education (HE) – learning provided by universities and similar institutions that offer degrees and Higher National Diplomas (HNDs).

Homeopathy – alternative medicine where a person is given highly diluted substances with the aim of ‘triggering the body’s natural system of healing’.

Hospice – providers of specialist care to children who have life-limiting or life-threatening illnesses.

Hypertonia – medical term to describe increased muscle tone and the reduced ability of a muscle to stretch.

Hypotonia – medical term to describe decreased muscle tone often involving low muscle strength.

Hypoxia – medical term to describe when a person or a region of the body is deprived of an adequate oxygen supply

Inclusion – commonly used term in education to describe the principle by which children with SEND attend school and participate in the curriculum alongside other pupils.

InCo (Inclusion Co-ordinator) – another name used to describe the role of the SENCo (Special Educational Needs Coordinator).

Kaye Walker – walking frame for children with mobility problems.

Key Stages – the National Curriculum has five phases known as ‘key stages’. They are based on age groups: Key Stage 1 (five to seven); Key Stage 2 (seven to 11); Key Stage 3 (11 to 14); Key Stage 4 (14 to 16) and Key Stage 5 (16 to 18).

Key Worker – education, health or social care professional who acts as a point of contact and source of information and support to children, parents and families. Sometimes known as a Lead Professional.

LD (Learning Disability) – term to describe various intellectual and social impairments present from childhood that prevent or hinder a person understanding, learning or remembering new subjects or skills. Also known as an intellectual disability or cognitive disability.

LDD (Learning Difficulties and Disabilities) – sometimes used by schools and colleges to refer to all learning differences that require special educational support.

Legacy Benefit – Universal Credit is an integrated means-tested benefit for people in or out of work. It is replacing: Child Tax Credits; Employment and Support Allowance (ESA); Housing Benefit; Income Support; Job Seeker’s Allowance (JSA); Working Tax Credits, which are now called ‘legacy benefits’.

Local Offer – see here

LSA (Learning Support Assistant) – a member of school staff who provides individual or small group support in the classroom to children with SEND.

Mainstream school – ordinary or community school managed by the local authority.

Makaton – communication system that combines manual signs and speech. Useful for children with learning disabilities and speech/language difficulties to help them understand and communicate.

Mediation – a service commissioned by local authorities to help settle disagreements between parents or young people and local authorities over EHC Needs Assessments and Plans before considering tribunal.

Medical Model of Disability – a view of disability in which people are defined by their impairments. Emphasises the problem, not the person, and the need for medical intervention or correction of the problem. Often used in comparison with the social model of disability.

Mental capacity – if someone has ‘mental capacity’, they’ve the right to make their own decisions, whether others agree with those choices or not. This right is protected in law by the Mental Capacity Act 2005.

Mild Learning Disability – someone with this diagnosis is usually able to hold a conversation and communicate most of their needs and wishes. They may need some support to understand abstract or complex ideas. People are often independent in caring for themselves and doing many everyday tasks. They usually have some basic reading and writing skills. People with a mild learning disability often go undiagnosed.

MLD (Moderate Learning Disability) – this diagnosis may be given if a person has problems acquiring literacy and language skills. Often there are associated problems with speech and communication, and social skills.

Modification – alteration to a programme of study or activity designed to give students better access to that element of the curriculum.

MRI (Magnetic Resonance Imaging) scan – scan using powerful magnetic fields and radio waves to produce detailed images of the inside of the body. Used to diagnose health conditions affecting bodily organs, tissue and bones.

MSI (Multi-Sensory Impairment) – when a person has a combination of sight and hearing loss.

Multi-disciplinary – when professionals from a number of specialities are involved in planning, assessment, treatment and/or meetings.

Muscle Tone – the amount of tension or resistance to movement in a muscle. Involved in movement, posture and so on.

Music Therapy – form of therapy often used to help communicate and build relationships with people through playing, singing and listening to music.

National Curriculum – covers the learning of all children aged five to 16 years in state schools in England. Includes the subjects children should learn, the knowledge, skills and understanding children should have in each subject and targets to measure progress.

Needs Assessment – process carried out by social workers to identify both a child’s and their family’s needs, and their eligibility for support from social care services.

Network 81 – provides support, advice and training around education for families of children with Special Educational Needs and Disabilities.

Neurodiverse – a term used to that means some people think different to others. It is often used by people with autism, ADHD, dyslexia, dyspraxia, and tourette syndrome and focuses on difference rather than deficit.

NG (Nasogastric) Tube– plastic tube inserted via the nose into the stomach to aid feeding.

NT (Neurotypical) – shorthand for ‘neurologically typical’.

NVQ (National Vocational Qualifications) – can be studied by people in employment, or by school and college students who are on a work placement or working part-time. Gradually being phased out and replaced by QCF (Qualifications and Credit Framework) awards, certificates and diplomas.

OFSTED (Office for Standards in Education, Children’s Services and Skills) – regulates and inspects childcare and educational services. Provides online reports on childcare providers and schools.

Ophthalmologist – medically trained doctor with specialist skills in the diagnosis, treatment and prevention of eye conditions.

Optometrist – healthcare professional who performs eye tests and prescribes corrective lenses or glasses to those who need them.

Orthoptist – healthcare professional who investigates, diagnoses and treats difficulties with binocular vision and problems with eye movement, including double vision, reduced vision and squints.

Orthotist – healthcare professional who makes and fits specialist braces, splints and footwear to support weak joints or muscles.

Osteopathy – detection, treatment and prevention of health problems by moving, massaging and stretching muscles and joints.

OT (Occupational Therapist) – healthcare professional who works with people to improve their skills in carrying out everyday activities.

Paediatrician – specialist doctor who manages conditions affecting babies, children and young people.

Palliative Care – treatment to improve the quality of life of anyone facing a life-threatening condition. It includes physical, emotional and spiritual care

PALS (Patient Advice and Liaison Service) – provides information on the NHS and investigates complaints made by patients.

Paraplegia – impairment in motor or sensory functions in the lower half of the body resulting in complete or partial paralysis in both legs. Usually due to injury or disease of the spinal cord.

Parent carer – describes and recognises the dual roles of parents of children with SEND who have caring responsibilities above and beyond other parents.

Parent Participation – the active involvement of parent carers in the planning of services for children and young people with SEND and their families.

Passported benefits – benefits you can get if your child receives DLA. They include Carer’s Allowance, extra payments to top up earned income, and top ups on your own benefits such as Universal Credit.

Pastoral Care – provision by schools that focuses on the personal, social and emotional needs of pupils.

Pastoral Support Plan – school strategy to help children improve their social, emotional and behavioural skills. Often used with children at risk of exclusion.

PECS (Picture Exchange Communication System) – picture-based system commonly used by pre-verbal or non-verbal children on the autistic spectrum or with a learning disability.

PEG (Percutaneous Endoscopic Gastrostomy) Feeding or G Tube – a method of feeding liquid food to a person whose oral intake is not adequate due to swallowing difficulties or sedation. The PEG tube is passed into the person’s stomach through the abdominal wall in a hospital procedure.

Personal Assistant (PA) – provides paid support and care to disabled children and adults for activities such as shopping, leisure activities, washing and personal care.

Personal Budgets – an amount of money identified by the local authority to deliver care and support. Allows disabled people and their carers flexibility to choose which services and support to use.

Personalisation – the provision of tailored care and support to people based on their individual needs and the choices they make about how they want to live their lives.

Person-centred Planning – approach where people with SEND and their families are equal partners with professionals when planning out their life and the support they need to achieve their goals.

Physiotherapist – healthcare professional who helps people affected by injury, illness or disability through movement and exercise, manual therapy, education and advice.

PIP (Personal Independence Payment) – a government benefit for people aged 16 and over. Intended to help with some of the extra costs caused by a long-term health condition or disability.

Play Therapy – play to help children understand difficult life experiences and feelings to reduce their anxiety, improve self-esteem and help manage emotions and behaviour.

PMLD (Profound and Multiple Learning Disabilities) – used when a person has a severe learning disability and other physical disabilities and/or severe medical conditions. Someone who has a PMLD may have difficulties with hearing, seeing, speaking and moving and will need a high level of support.

Portage – an educational service for preschool children with SEND and their families.

Primitive Reflexes – newborn babies have a set of involuntary movements and actions, such as the Moro, or ‘startle’ reflex and the sucking reflex. They should be inhibited by the age of one, as part of a child’s normal development.

Prognosis – medical term to describe the likely progress and outcome of an illness, condition or disability.

Progressive – term used to refer to an illness or condition that generally gets worse over time.

Provision Map – a brief document setting out how a school will support a child with SEND.

PRU (Pupil Referral Unit) – also known as ‘alternative provision’, these are specialist schools run by local authorities for children who have been excluded, have health issues or are otherwise unable to attend a mainstream or special school. QCF (Qualifications and Credit Framework) awards, certificates and diplomas

Psychiatrist – doctor specialising in diagnosing and treating people with mental health issues.

Quadriplegia – refers to complete or partial paralysis of all four limbs and torso. Also known as Tetraplegia.

RADAR key – opens most locked disabled and fully accessible toilets. Available from the district or borough council.

Raising the Participation Age – legislation that means young people are expected to stay in some form of education or training until their 18th birthday.

Re-consideration – re-assessment of applications for PIP or DLA that were initially turned down. Many decisions are overturned on reconsideration.

Respite – a break from caring for someone with an illness or disability.

Retained Reflexes – in some children, primitive reflexes remain active past the first year of life. This can cause issues for children with motor skills, learning and behaviour. Movement programmes can help to inhibit these reflexes, allowing the brain and body to communicate more smoothly and effectively.

Revision – a review of PIP/DLA applications where the person disagrees with the rate at which they have been assessed.

Revision – a new decision by the DWP on a DLA or PIP application. Replaces the old decision and takes effect from when it was originally made.

SALT (Speech and Language Therapist) – healthcare professional who diagnoses and treats people with speech, language, communication and understanding difficulties, plus individuals with swallowing and feeding problems.

Scoliosis – a sideways twisting and curvature of the spine that can also pull the ribcage out of position.

SEMH Needs (Social, Emotional and Mental Health Needs) – a special educational need in which children and young people have difficulties in managing their emotions and behaviour that mean they may struggle to learn and cope in the classroom without additional strategies and interventions. Children with SEMH often feel anxious, scared and misunderstood.

SENAT (Special Educational Needs Assessment Team) – the local authority team responsible for doing EHC Needs Assessments and co-producing an EHC Plan with parents and professionals, if a plan is required.

SENCo (Special Educational Needs Coordinator) – member of staff responsible for the co-ordination of SEND provision in schools.

SEND Code of Practice – statutory guidance on duties, policies and procedures relating to the Children’s and Families Act that organisations such as local authorities, schools, early years providers, NHS trusts and clinical commissioning groups must comply with (unless there are exceptional reasons not to).

SENDIAS (Special Educational Needs and Disability Information, Advice and Support Service) – statutory impartial provider of information and advice to children and young people with SEND and their parents about matters relating to their SEND, including EHC Plans, assessments, annual review, appeals and tribunals.

SEND Under Fives – support process to identify children who have, or may have, SEND so they can be offered the appropriate support in their early years setting and for their school transition. Involves professionals from a variety of specialisms including early years and health.

Senior planning Coordinator – a key professional from the Local Authority involved in transition planning for your child. They should be invited to the Year 11 annual review and also the Year 12 and 13 reviews if your young person is leaving school or college. They may also stay involved when the young person leaves school to attend further education or training.

Sensory Integration – the process by which the brain receives, processes and uses information from the five senses (sight, hearing, touch, smell and taste), the sense of balance and of knowing one’s position in space and in relation to others (proprioception) and the brain’s sense of what’s going on inside the body (interoception).

Sensory Integration Therapy - therapy to help children who have sensory integration difficulties or sensory processing difficulties to encourage the brain to change its response to sensory stimuli. A child’s individual needs will be assessed before a programme of therapy is designed for them.

Sensory Processing difficulties – sometimes called sensory integration difficulties this is a condition where the brain struggles to interpret information from the different senses.

SEN Support – additional support for children and young people with SEND that is given from a nursery, school or further education college’s own resources. If a child has more complex needs they may need an EHC Plan.

Severely Sight Impaired – term used to describe blindness.

Shopmobility – scheme that operates in many city centres and shopping centres where a disabled person can borrow a wheelchair or mobility scooter.

Short break – fun, leisure and social activities for children and young people with SEND outside the school day, which also give parents and carers a break from their caring role.

Sight Impaired – term used to describe partial sight loss.

Signalong – communication system that uses signs based on British Sign Language and the simultaneous use of the spoken word.

SLCN (Speech, Language and Communication Needs) – difficulties with listening and understanding, or with talking, or both.

SLD (Severe Learning Disability) – this diagnosis is given when a person has substantial difficulty in acquiring literacy and language skills and often, associated problems with mobility, co-ordination, communication, perception and acquiring self-help skills.

Social Model of Disability – view of disability that states it is created by society as a result of physical and cultural barriers and attitudes that lead to discrimination and exclusion. Used in contrast to the medical model of disability.

Spasticity – medical term for muscle stiffness.

Specialist Provision – a setting which is organised to make special educational provision for pupils with SEND whose needs cannot be met in a mainstream setting.

Special School – a school that specialises in education provision for children with SEND.

Spider Therapy – treatment for people with cerebral palsy where elastic cords are attached to the body enabling in a way that controls movement and strengthens parts of the body affected by their condition.

Spinal Jacket – special brace used to support and correct the spine. Sometimes known as a TLSO (Thoracolumbo Sacral Orthosis).

SpLD (Specific Learning Difficulty) – a difficulty with certain aspects of learning. The most common SpLDs are dyslexia, dyscalculia, dyspraxia and dysgraphia.

Statutory Assessment – now called an EHC Needs Assessment, the process by which local authorities carry out an assessment of a child’s special educational needs. A number of people participate in the process including: parents; the child’s school or college; an educational psychologist; health care professionals; and social care services. At the end the local authority will either issue an EHC Plan or explain why one is not necessary and how the child’s needs will be met.

Student Union (SU) – all universities and most colleges have an SU affiliated to the National Union of Students (NUS). Provides welfare services and can be a useful source of information and support when applying to a university, or when you have been offered a place.

Supercession – a review of PIP/DLA where the person’s circumstances have changed and they believe they need more help.

Supported Internship – a structured study programme based primarily with an employer, which aim to help young people who have an EHC Plan to achieve paid employment through learning in the workplace. Internships are unpaid, and last for a minimum of six months.

Supported living – accommodation where there are staff on site, either in a ‘group’ home, where people have their own room but share other facilities; or a self-contained flat or studio. Focuses on helping the young person to develop life skills and independence, and sharing responsibility for cooking, cleaning and shopping.

Switch Access – technological device used to access computers for people with severe physical disabilities. The switch replaces the need for a mouse or keyboard.

TA (Teaching Assistant) – a member of school staff who provides individual or small group support in the classroom. Also known as a Learning Support Assistant or a Special Support Assistant.

TAF (Team around the Family) – team of professionals from various backgrounds and services working together to provide joined-up support for a child or young person and their family.

Temporary Disapplication – removal of those parts of the National Curriculum where it is impossible or inappropriate for the child to participate.

T Levels – two-year courses, which are equivalent to 3 A levels. They offer students a mix of classroom learning and work placements. Courses include i agriculture, construction, finance and law.

Transition Planning – holistic approach to working out what a young person will need to support them as they head towards adulthood to ensure that they can live as independently as possible. Covers all aspects including further education and employment to health and social care, where they will live and how they can play an active role in their local community.

Trauma – a serious injury or shock.

Triage – way to prioritise patients’ treatment based on the severity of their condition and the need for immediate medical attention.

Universal Credit - a monthly government benefit that has replaced some other benefits. You may be able to claim Universal Credit if you’re on a low income or out of work. How much you’ll get depends on your circumstances, including your income and how many children you have.

VOCA (Voice Output Communication Aid) – an electronic device which allows people who are unable to use natural speech to generate printed or spoken text.

Will Trusts – a formal legal arrangement set up as part of a will where the beneficiary is a vulnerable disabled person to protect people who may not have the capacity to manage their own finances. There are several types of trust, including Discretionary Trusts and Disabled Person’s Trusts (DPT). To qualify for a DPT, your child will need to meet certain conditions, such as receiving the middle or higher rate care component of DLA, or receiving PIP.

Work Capability Assessment – carried out by a healthcare professional to document a person’s capability for work or ‘work related activity’. May include a medical. Used to assess eligibility for Employment and Support Allowance.

Year 9 Annual Review – a key review where you and your child will be asked to think about their future and, with the input of the professionals involved, start to plan out what your child would like to do after the age of 16 and how they will be supported to make it happen.

Young carer – someone under 18 who helps look after a relative who has a condition or disability. E.g. siblings of a disabled young person may have to take on household chores, or help with care tasks. Young carers can have their needs assessed by social care, too.

Contents

About this book

About Reaching Families

Introduction

Using this guide with the Local Offer

Section one: Starting your journey

Diagnosis

Someone to talk to

Survival strategies

Siblings and wider family

Section two: Finding your way

Education

Health and medical matters

Life-limiting conditions

Social care and help with daily life

Money matters

Social life and travel

Section three: Teens and adulthood

Planning for your child’s future

Involving your child

Growing up and relationships

A place to live

Employment and life skills

Travel for young people

Section four: Directories

Essential contacts

Local directory

National directory

Education directory

Further and higher education directory

Grantmaking directory

Disability jargon buster